Behavioral Health

THE CASE

Juana*, a 10-year-old who identifies as a cisgender, Hispanic female, was referred to our integrated behavioral health program by her primary care physician. Her mother was concerned because Juana had been refusing to attend school due to complaints of gastrointestinal upset. This concern began when Juana was in first grade but had increased in severity over the past few months.

Upon further questioning, the patient reported that she initially did not want to attend school due to academic difficulties and bullying. However, since COVID-19, her fears of attending school had significantly worsened. Juana’s mother’s primary language was Spanish and she had limited English proficiency; she reported difficulty communicating with school personnel about Juana’s poor attendance.

Juana had recently had a complete medical work-up for her gastrointestinal concerns, with negative results. Since the negative work-up, Juana’s mother had told her daughter that she would be punished if she didn’t go to school.

● How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

School avoidance, also referred to as school refusal, is a symptom of an emotional condition that manifests as a child refusing to go to school or having difficulty going to school or remaining in the classroom for the entire day. School avoidance is not a clinical diagnosis but often is related to an underlying disorder.¹

School avoidance is common, affecting 5% to 28% of youth sometime in their school career.² Available data are not specific to school avoidance but focus on chronic absenteeism (missing ≥ 15 days per school year). Rates of chronic absenteeism are high in elementary and middle school (about 14% each) and tend to increase in high school (about 21%).³ Students with disabilities are 1.5 times more likely to be chronically absent than students without disabilities.³ Compared to White students, American Indian and Pacific Islander students are > 50% more likely, Black students 40% more likely, and Hispanic students 17% more likely to miss ≥ 3 weeks of school.³ Rates of chronic absenteeism are similar (about 16%) for males and females.³

Absenteeism can have immediate and long-term negative effects.⁴ School attendance issues are correlated to negative life outcomes, such as delinquency, teen pregnancy, substance use, and poor academic achievement.⁵ According to the US Department of Education, individuals who chronically miss school are less likely to achieve educational milestones (particularly in younger years) and may be more likely to drop out of school.³

What school avoidance is (and what it isn’t)

It is important to distinguish school avoidance from truancy. Truancy often is associated with antisocial behavior such as lying and stealing, while school avoidance occurs in the absence of significant antisocial disorders.⁶ With truancy, the absence usually is hidden from the parent. In contrast, with school avoidance, the parents usually know where their child is; the child often spends the day secluded in their bedroom. Students who engage in truancy do not demonstrate excessive anxiety about attending school but may have decreased interest in schoolwork and academic performance.⁶ With school avoidance, the child exhibits severe emotional distress about attending school but is willing to complete schoolwork at home.

Why children may avoid school

School avoidance is a biopsychosocial condition with a multitude of underlying causes.⁴ It is associated most commonly with anxiety disorders and neurodevelopmental disorders, including but not limited to learning disabilities and attention-deficit/hyperactivity disorder.¹ Depressive disorders also have been associated with school avoidance.⁷ Social concerns related to changes with school personnel or classes, academic challenges, bullying, health emergencies, and family stressors also can result in symptoms of school avoidance.¹

Continue to: A child seeking to avoid...

A child seeking to avoid school may be motivated by potential negative and/or positive effects of doing so. Kearney and Silverman⁸ identified 4 primary functions of school refusal behaviors:

• avoiding stimuli at school that lend to negative affect (depression, anxiety)
• escaping the social interactions and/or situations for evaluation that occur at school
• gaining more attention from caregivers, and
• obtaining tangible rewards or benefits outside the school environment.

How school avoidance manifests

School avoidance has attributes of internalizing (depression, anxiety, somatic complaints) and externalizing (aggression, tantrums, running away, clinginess) behaviors. It can cause distress for the student, parents and caregivers, and school personnel.

With school avoidance, the child exhibits severe emotional distress about attending school but is willing to complete schoolwork at home.

The avoidance may manifest with behaviors such as crying, hiding, emotional outbursts, and refusing to move prior to the start of the school day. Additionally, the child may beg their parents not to make them go to school or, when at school, they may leave the classroom to go to a safe place such as the nurse’s or counselor’s office.

The avoidance may occur abruptly, such as after a break in the school schedule or a change of school. Or it may be the final result of the student’s gradual inability to cope with the underlying issue.

How to assess for school avoidance

Due to the multifactorial nature of this presenting concern, a comprehensive evaluation is recommended when school avoidance is reported.⁴ Often the child will present with physical symptoms, such as abdominal pain, nausea, vomiting, diarrhea, headaches, shortness of breath, dizziness, chest pain, and palpitations. A thorough medical examination should be performed to rule out a physiological cause. The medical visit should include clinical interviews with the patient and family members or guardians.

Continue to: To identify school avoidance...

To identify school avoidance in pediatric and adolescent populations, medical history and physical ­examination—along with social history to better understand familial, social, and academic concerns—should be a regular part of the medical encounter. The School Refusal Assessment Scale-Revised (SRAS-R) for both parents and their children was developed to assess for school avoidance and can be utilized within the primary care setting. Additional psychiatric history for both the family and patient may be beneficial, due to associations between parental mental health concerns and school avoidance in their children.^9,10

More than onethird of children with behavioral problems, such as school avoidance, have been diagnosed with anxiety.

Assessment for an underlying mental health condition, such as an anxiety or depressive disorder, should be completed when a patient presents with school avoidance.⁴ More than one-third of children with behavioral problems, such as school avoidance, have been diagnosed with anxiety.¹¹ The 2020 National Survey of Children’s Health found that 7.8% of children and adolescents ages 3 to 17 years had a current anxiety disorder, leading the US Preventive Services Task Force to recommend screening for anxiety in children and adolescents ages 8 to 18 years.^12,13 Furthermore, if academic achievement is of concern, then consideration of further assessment for neurodevelopmental disorders is warranted.¹

Treatment is multimodal and multidisciplinary

Treatment for school avoidance is often multimodal and may involve interdisciplinary, team-based care including the medical provider, school system (eg, Child Study Team), family, and mental health care provider.^1,4

Cognitive behavioral therapy (CBT) is the most-studied intervention for school avoidance, with behavioral, exposure-based interventions often central to therapeutic gains in treatment.^1,14,15 The goals of treatment are to increase school attendance while decreasing emotional distress through various strategies, including exposure-based interventions, contingency management with parents and school staff, relaxation training, and/or social skills training.^14,16 Collaborative involvement between the medical provider and the school system is key to successful treatment.

Medication may be considered alone or in combination with CBT when comorbid mental health conditions have been identified. Selective serotonin reuptake inhibitors (SSRIs)—including fluoxetine, sertraline, and escitalopram—are considered first-line treatment for anxiety in children and adolescents.¹⁷ Serotonin-norepinephrine reuptake inhibitors (SNRIs), such as duloxetine and venlafaxine, also have been shown to be effective. Duloxetine is the only medication approved by the US Food and Drug Administration (FDA) for treatment of generalized anxiety disorder in children ages 7 years and older.¹⁷

Continue to: SSRIs and SNRIs have a boxed warning...

SSRIs and SNRIs have a boxed warning from the FDA for increased suicidal thoughts and behaviors in children and adolescents. Although this risk is rare, it should be discussed with the patient and parent/guardian in order to obtain informed consent prior to treatment initiation.

Medication should be started at the lowest possible dose and increased gradually. Patients should remain on the medication for 6 to 12 months after symptom resolution and should be tapered during a nonstressful time, such as the summer break.

THE CASE

Based on the concerns of continued school refusal after negative gastrointestinal work-up, Juana’s physician screened her for anxiety and conducted a clinical interview to better understand any psychosocial concerns. Juana’s score of 10 on the General Anxiety Disorder-7 scale indicated moderate anxiety. She reported symptoms consistent with social anxiety disorder contributing to school avoidance.

The physician consulted with the clinic’s behavioral health consultant (BHC) to confirm the multimodal treatment plan, which was then discussed with Juana and her mother. The physician discussed medication options (SSRIs) and provided documentation (in both English and Spanish) from the visit to Juana’s mother so she could initiate a school-based intervention with the Child Study Team at Juana’s school. A plan for CBT—including a collaborative contingency management plan between the patient and her parent (eg, a reward chart for attending school) and exposure interventions (eg, a graduated plan to participate in school-based activities with the end goal to resume full school attendance)—was developed with the BHC. Biweekly follow-up appointments were scheduled with the BHC and monthly appointments were scheduled with the physician to reinforce the interventions.

CORRESPONDENCE
Meredith L. C. Williamson, PhD, 2900 East 29th Street, Suite 100, Bryan, TX 77840; meredith.williamson@tamu.edu

THE CASE

Juana*, a 10-year-old who identifies as a cisgender, Hispanic female, was referred to our integrated behavioral health program by her primary care physician. Her mother was concerned because Juana had been refusing to attend school due to complaints of gastrointestinal upset. This concern began when Juana was in first grade but had increased in severity over the past few months.

Upon further questioning, the patient reported that she initially did not want to attend school due to academic difficulties and bullying. However, since COVID-19, her fears of attending school had significantly worsened. Juana’s mother’s primary language was Spanish and she had limited English proficiency; she reported difficulty communicating with school personnel about Juana’s poor attendance.

Juana had recently had a complete medical work-up for her gastrointestinal concerns, with negative results. Since the negative work-up, Juana’s mother had told her daughter that she would be punished if she didn’t go to school.

● How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

School avoidance, also referred to as school refusal, is a symptom of an emotional condition that manifests as a child refusing to go to school or having difficulty going to school or remaining in the classroom for the entire day. School avoidance is not a clinical diagnosis but often is related to an underlying disorder.¹

School avoidance is common, affecting 5% to 28% of youth sometime in their school career.² Available data are not specific to school avoidance but focus on chronic absenteeism (missing ≥ 15 days per school year). Rates of chronic absenteeism are high in elementary and middle school (about 14% each) and tend to increase in high school (about 21%).³ Students with disabilities are 1.5 times more likely to be chronically absent than students without disabilities.³ Compared to White students, American Indian and Pacific Islander students are > 50% more likely, Black students 40% more likely, and Hispanic students 17% more likely to miss ≥ 3 weeks of school.³ Rates of chronic absenteeism are similar (about 16%) for males and females.³

Absenteeism can have immediate and long-term negative effects.⁴ School attendance issues are correlated to negative life outcomes, such as delinquency, teen pregnancy, substance use, and poor academic achievement.⁵ According to the US Department of Education, individuals who chronically miss school are less likely to achieve educational milestones (particularly in younger years) and may be more likely to drop out of school.³

What school avoidance is (and what it isn’t)

It is important to distinguish school avoidance from truancy. Truancy often is associated with antisocial behavior such as lying and stealing, while school avoidance occurs in the absence of significant antisocial disorders.⁶ With truancy, the absence usually is hidden from the parent. In contrast, with school avoidance, the parents usually know where their child is; the child often spends the day secluded in their bedroom. Students who engage in truancy do not demonstrate excessive anxiety about attending school but may have decreased interest in schoolwork and academic performance.⁶ With school avoidance, the child exhibits severe emotional distress about attending school but is willing to complete schoolwork at home.

Why children may avoid school

School avoidance is a biopsychosocial condition with a multitude of underlying causes.⁴ It is associated most commonly with anxiety disorders and neurodevelopmental disorders, including but not limited to learning disabilities and attention-deficit/hyperactivity disorder.¹ Depressive disorders also have been associated with school avoidance.⁷ Social concerns related to changes with school personnel or classes, academic challenges, bullying, health emergencies, and family stressors also can result in symptoms of school avoidance.¹

Continue to: A child seeking to avoid...

A child seeking to avoid school may be motivated by potential negative and/or positive effects of doing so. Kearney and Silverman⁸ identified 4 primary functions of school refusal behaviors:

• avoiding stimuli at school that lend to negative affect (depression, anxiety)
• escaping the social interactions and/or situations for evaluation that occur at school
• gaining more attention from caregivers, and
• obtaining tangible rewards or benefits outside the school environment.

How school avoidance manifests

School avoidance has attributes of internalizing (depression, anxiety, somatic complaints) and externalizing (aggression, tantrums, running away, clinginess) behaviors. It can cause distress for the student, parents and caregivers, and school personnel.

With school avoidance, the child exhibits severe emotional distress about attending school but is willing to complete schoolwork at home.

The avoidance may manifest with behaviors such as crying, hiding, emotional outbursts, and refusing to move prior to the start of the school day. Additionally, the child may beg their parents not to make them go to school or, when at school, they may leave the classroom to go to a safe place such as the nurse’s or counselor’s office.

The avoidance may occur abruptly, such as after a break in the school schedule or a change of school. Or it may be the final result of the student’s gradual inability to cope with the underlying issue.

How to assess for school avoidance

Due to the multifactorial nature of this presenting concern, a comprehensive evaluation is recommended when school avoidance is reported.⁴ Often the child will present with physical symptoms, such as abdominal pain, nausea, vomiting, diarrhea, headaches, shortness of breath, dizziness, chest pain, and palpitations. A thorough medical examination should be performed to rule out a physiological cause. The medical visit should include clinical interviews with the patient and family members or guardians.

Continue to: To identify school avoidance...

To identify school avoidance in pediatric and adolescent populations, medical history and physical ­examination—along with social history to better understand familial, social, and academic concerns—should be a regular part of the medical encounter. The School Refusal Assessment Scale-Revised (SRAS-R) for both parents and their children was developed to assess for school avoidance and can be utilized within the primary care setting. Additional psychiatric history for both the family and patient may be beneficial, due to associations between parental mental health concerns and school avoidance in their children.^9,10

More than onethird of children with behavioral problems, such as school avoidance, have been diagnosed with anxiety.

Assessment for an underlying mental health condition, such as an anxiety or depressive disorder, should be completed when a patient presents with school avoidance.⁴ More than one-third of children with behavioral problems, such as school avoidance, have been diagnosed with anxiety.¹¹ The 2020 National Survey of Children’s Health found that 7.8% of children and adolescents ages 3 to 17 years had a current anxiety disorder, leading the US Preventive Services Task Force to recommend screening for anxiety in children and adolescents ages 8 to 18 years.^12,13 Furthermore, if academic achievement is of concern, then consideration of further assessment for neurodevelopmental disorders is warranted.¹

Treatment is multimodal and multidisciplinary

Treatment for school avoidance is often multimodal and may involve interdisciplinary, team-based care including the medical provider, school system (eg, Child Study Team), family, and mental health care provider.^1,4

Cognitive behavioral therapy (CBT) is the most-studied intervention for school avoidance, with behavioral, exposure-based interventions often central to therapeutic gains in treatment.^1,14,15 The goals of treatment are to increase school attendance while decreasing emotional distress through various strategies, including exposure-based interventions, contingency management with parents and school staff, relaxation training, and/or social skills training.^14,16 Collaborative involvement between the medical provider and the school system is key to successful treatment.

Medication may be considered alone or in combination with CBT when comorbid mental health conditions have been identified. Selective serotonin reuptake inhibitors (SSRIs)—including fluoxetine, sertraline, and escitalopram—are considered first-line treatment for anxiety in children and adolescents.¹⁷ Serotonin-norepinephrine reuptake inhibitors (SNRIs), such as duloxetine and venlafaxine, also have been shown to be effective. Duloxetine is the only medication approved by the US Food and Drug Administration (FDA) for treatment of generalized anxiety disorder in children ages 7 years and older.¹⁷

Continue to: SSRIs and SNRIs have a boxed warning...

SSRIs and SNRIs have a boxed warning from the FDA for increased suicidal thoughts and behaviors in children and adolescents. Although this risk is rare, it should be discussed with the patient and parent/guardian in order to obtain informed consent prior to treatment initiation.

Medication should be started at the lowest possible dose and increased gradually. Patients should remain on the medication for 6 to 12 months after symptom resolution and should be tapered during a nonstressful time, such as the summer break.

THE CASE

Based on the concerns of continued school refusal after negative gastrointestinal work-up, Juana’s physician screened her for anxiety and conducted a clinical interview to better understand any psychosocial concerns. Juana’s score of 10 on the General Anxiety Disorder-7 scale indicated moderate anxiety. She reported symptoms consistent with social anxiety disorder contributing to school avoidance.

The physician consulted with the clinic’s behavioral health consultant (BHC) to confirm the multimodal treatment plan, which was then discussed with Juana and her mother. The physician discussed medication options (SSRIs) and provided documentation (in both English and Spanish) from the visit to Juana’s mother so she could initiate a school-based intervention with the Child Study Team at Juana’s school. A plan for CBT—including a collaborative contingency management plan between the patient and her parent (eg, a reward chart for attending school) and exposure interventions (eg, a graduated plan to participate in school-based activities with the end goal to resume full school attendance)—was developed with the BHC. Biweekly follow-up appointments were scheduled with the BHC and monthly appointments were scheduled with the physician to reinforce the interventions.

CORRESPONDENCE
Meredith L. C. Williamson, PhD, 2900 East 29th Street, Suite 100, Bryan, TX 77840; meredith.williamson@tamu.edu

THE CASE

Juana*, a 10-year-old who identifies as a cisgender, Hispanic female, was referred to our integrated behavioral health program by her primary care physician. Her mother was concerned because Juana had been refusing to attend school due to complaints of gastrointestinal upset. This concern began when Juana was in first grade but had increased in severity over the past few months.

Upon further questioning, the patient reported that she initially did not want to attend school due to academic difficulties and bullying. However, since COVID-19, her fears of attending school had significantly worsened. Juana’s mother’s primary language was Spanish and she had limited English proficiency; she reported difficulty communicating with school personnel about Juana’s poor attendance.

Juana had recently had a complete medical work-up for her gastrointestinal concerns, with negative results. Since the negative work-up, Juana’s mother had told her daughter that she would be punished if she didn’t go to school.

● How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

School avoidance, also referred to as school refusal, is a symptom of an emotional condition that manifests as a child refusing to go to school or having difficulty going to school or remaining in the classroom for the entire day. School avoidance is not a clinical diagnosis but often is related to an underlying disorder.¹

School avoidance is common, affecting 5% to 28% of youth sometime in their school career.² Available data are not specific to school avoidance but focus on chronic absenteeism (missing ≥ 15 days per school year). Rates of chronic absenteeism are high in elementary and middle school (about 14% each) and tend to increase in high school (about 21%).³ Students with disabilities are 1.5 times more likely to be chronically absent than students without disabilities.³ Compared to White students, American Indian and Pacific Islander students are > 50% more likely, Black students 40% more likely, and Hispanic students 17% more likely to miss ≥ 3 weeks of school.³ Rates of chronic absenteeism are similar (about 16%) for males and females.³

Absenteeism can have immediate and long-term negative effects.⁴ School attendance issues are correlated to negative life outcomes, such as delinquency, teen pregnancy, substance use, and poor academic achievement.⁵ According to the US Department of Education, individuals who chronically miss school are less likely to achieve educational milestones (particularly in younger years) and may be more likely to drop out of school.³

What school avoidance is (and what it isn’t)

It is important to distinguish school avoidance from truancy. Truancy often is associated with antisocial behavior such as lying and stealing, while school avoidance occurs in the absence of significant antisocial disorders.⁶ With truancy, the absence usually is hidden from the parent. In contrast, with school avoidance, the parents usually know where their child is; the child often spends the day secluded in their bedroom. Students who engage in truancy do not demonstrate excessive anxiety about attending school but may have decreased interest in schoolwork and academic performance.⁶ With school avoidance, the child exhibits severe emotional distress about attending school but is willing to complete schoolwork at home.

Why children may avoid school

School avoidance is a biopsychosocial condition with a multitude of underlying causes.⁴ It is associated most commonly with anxiety disorders and neurodevelopmental disorders, including but not limited to learning disabilities and attention-deficit/hyperactivity disorder.¹ Depressive disorders also have been associated with school avoidance.⁷ Social concerns related to changes with school personnel or classes, academic challenges, bullying, health emergencies, and family stressors also can result in symptoms of school avoidance.¹

Continue to: A child seeking to avoid...

A child seeking to avoid school may be motivated by potential negative and/or positive effects of doing so. Kearney and Silverman⁸ identified 4 primary functions of school refusal behaviors:

• avoiding stimuli at school that lend to negative affect (depression, anxiety)
• escaping the social interactions and/or situations for evaluation that occur at school
• gaining more attention from caregivers, and
• obtaining tangible rewards or benefits outside the school environment.

How school avoidance manifests

School avoidance has attributes of internalizing (depression, anxiety, somatic complaints) and externalizing (aggression, tantrums, running away, clinginess) behaviors. It can cause distress for the student, parents and caregivers, and school personnel.

With school avoidance, the child exhibits severe emotional distress about attending school but is willing to complete schoolwork at home.

The avoidance may manifest with behaviors such as crying, hiding, emotional outbursts, and refusing to move prior to the start of the school day. Additionally, the child may beg their parents not to make them go to school or, when at school, they may leave the classroom to go to a safe place such as the nurse’s or counselor’s office.

The avoidance may occur abruptly, such as after a break in the school schedule or a change of school. Or it may be the final result of the student’s gradual inability to cope with the underlying issue.

How to assess for school avoidance

Due to the multifactorial nature of this presenting concern, a comprehensive evaluation is recommended when school avoidance is reported.⁴ Often the child will present with physical symptoms, such as abdominal pain, nausea, vomiting, diarrhea, headaches, shortness of breath, dizziness, chest pain, and palpitations. A thorough medical examination should be performed to rule out a physiological cause. The medical visit should include clinical interviews with the patient and family members or guardians.

Continue to: To identify school avoidance...

To identify school avoidance in pediatric and adolescent populations, medical history and physical ­examination—along with social history to better understand familial, social, and academic concerns—should be a regular part of the medical encounter. The School Refusal Assessment Scale-Revised (SRAS-R) for both parents and their children was developed to assess for school avoidance and can be utilized within the primary care setting. Additional psychiatric history for both the family and patient may be beneficial, due to associations between parental mental health concerns and school avoidance in their children.^9,10

More than onethird of children with behavioral problems, such as school avoidance, have been diagnosed with anxiety.

Assessment for an underlying mental health condition, such as an anxiety or depressive disorder, should be completed when a patient presents with school avoidance.⁴ More than one-third of children with behavioral problems, such as school avoidance, have been diagnosed with anxiety.¹¹ The 2020 National Survey of Children’s Health found that 7.8% of children and adolescents ages 3 to 17 years had a current anxiety disorder, leading the US Preventive Services Task Force to recommend screening for anxiety in children and adolescents ages 8 to 18 years.^12,13 Furthermore, if academic achievement is of concern, then consideration of further assessment for neurodevelopmental disorders is warranted.¹

Treatment is multimodal and multidisciplinary

Treatment for school avoidance is often multimodal and may involve interdisciplinary, team-based care including the medical provider, school system (eg, Child Study Team), family, and mental health care provider.^1,4

Cognitive behavioral therapy (CBT) is the most-studied intervention for school avoidance, with behavioral, exposure-based interventions often central to therapeutic gains in treatment.^1,14,15 The goals of treatment are to increase school attendance while decreasing emotional distress through various strategies, including exposure-based interventions, contingency management with parents and school staff, relaxation training, and/or social skills training.^14,16 Collaborative involvement between the medical provider and the school system is key to successful treatment.

Medication may be considered alone or in combination with CBT when comorbid mental health conditions have been identified. Selective serotonin reuptake inhibitors (SSRIs)—including fluoxetine, sertraline, and escitalopram—are considered first-line treatment for anxiety in children and adolescents.¹⁷ Serotonin-norepinephrine reuptake inhibitors (SNRIs), such as duloxetine and venlafaxine, also have been shown to be effective. Duloxetine is the only medication approved by the US Food and Drug Administration (FDA) for treatment of generalized anxiety disorder in children ages 7 years and older.¹⁷

Continue to: SSRIs and SNRIs have a boxed warning...

SSRIs and SNRIs have a boxed warning from the FDA for increased suicidal thoughts and behaviors in children and adolescents. Although this risk is rare, it should be discussed with the patient and parent/guardian in order to obtain informed consent prior to treatment initiation.

Medication should be started at the lowest possible dose and increased gradually. Patients should remain on the medication for 6 to 12 months after symptom resolution and should be tapered during a nonstressful time, such as the summer break.

THE CASE

Based on the concerns of continued school refusal after negative gastrointestinal work-up, Juana’s physician screened her for anxiety and conducted a clinical interview to better understand any psychosocial concerns. Juana’s score of 10 on the General Anxiety Disorder-7 scale indicated moderate anxiety. She reported symptoms consistent with social anxiety disorder contributing to school avoidance.

The physician consulted with the clinic’s behavioral health consultant (BHC) to confirm the multimodal treatment plan, which was then discussed with Juana and her mother. The physician discussed medication options (SSRIs) and provided documentation (in both English and Spanish) from the visit to Juana’s mother so she could initiate a school-based intervention with the Child Study Team at Juana’s school. A plan for CBT—including a collaborative contingency management plan between the patient and her parent (eg, a reward chart for attending school) and exposure interventions (eg, a graduated plan to participate in school-based activities with the end goal to resume full school attendance)—was developed with the BHC. Biweekly follow-up appointments were scheduled with the BHC and monthly appointments were scheduled with the physician to reinforce the interventions.

CORRESPONDENCE
Meredith L. C. Williamson, PhD, 2900 East 29th Street, Suite 100, Bryan, TX 77840; meredith.williamson@tamu.edu

THE CASE

Sam C* is a 68-year-old man who presented to his family physician in a rural health clinic due to concerns about weight loss. Since his visit 8 months prior, Mr. C unintentionally had lost 20 pounds. Upon questioning, Mr. C also reported feeling irritable and having difficulty with sleep and concentration.

A review of systems did not indicate the presence of infection or other medical conditions. In the 6 years since becoming a patient to the practice, he had reported no chronic health concerns, was taking no medications, and had only been to the clinic for his annual check-up appointments. He completed a Patient Health Questionnaire (PHQ-9) and scored 18, indicating moderately severe depression.

Mr. C had established care with his physician when he moved to the area from out of state so that he could be closer to his parents, who were in their mid-80s at the time. Mr. C’s physician also had been the family physician for his parents for the previous 20 years. Three years prior to Mr. C’s presentation for weight loss, his mother had received a diagnosis of acute leukemia; she died a year later.

Over the past year, Mr. C had needed to take a more active role in the care of his father, who was now in his early 90s. Mr. C’s father, who was previously in excellent health, had begun to develop significant health problems, including degenerative arthritis and progressive vascular dementia. He also had ataxia, leading to poor mobility, and a neurogenic bladder requiring self-catheterization, which required Mr. C’s assistance. Mr. C lived next door to his father and provided frequent assistance with activities of daily living. However, his father, who always had been the dominant figure in the family, was determined to maintain his independence and not relinquish control to others.

The strain of caregiving activities, along with managing his father’s inflexibility, was causing increasing distress for Mr. C. As he told his family physician, “I just don’t know what to do.”

● How would you proceed with this patient?

* The patient’s name has been changed to protect his identity.

It is estimated that more than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.¹ As individuals with dementia progressively decline, they require increased assistance with activities of daily living (ADLs, such as bathing and dressing) and instrumental activities of daily living (IADLs, such as paying bills and using transportation). Most of this assistance comes from informal caregiving provided by family members and friends.

Caregiver burden can be defined as “the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member.”² Caregiver stress has been found to be higher for dementia caregiving than other types of caregiving.³ In particular, caring for someone with greater behavioral and psychological symptoms of dementia (BPSDs) has been associated with higher caregiver burden.^4-7

Beyond the subjective burden of care­giving, there are other potential negative ­consequences for dementia caregivers (see ­TABLE 1^8-14 and TABLE 2^15,16). In addition, caregiver distress is related to a number of care recipient outcomes, including earlier institutionalization, more hospitalizations, more BPSDs, poorer quality of life, and greater likelihood of experiencing elder abuse.¹⁷

Assessment, reassessment are key to meeting needs

Numerous factors can foster caregiver well-­being, including feelings of accomplishment and contribution, a strengthening of the relationship with the care recipient, and feeling supported by friends, family, and formal care systems.^18,19 Family physicians can play an important role by assessing and supporting patients with dementia and their caregivers. Ideally, the individual with dementia and the caregiver will be assessed both together and separately.

Caregiver distress is related to care recipient outcomes, such as earlier institutionalization, more hospitalizations, and poorer quality of life.

A thorough assessment includes gathering information about the context and quality of the caregiving relationship; caregiver perception of the care recipient’s health and functional status; caregiver values and preferences; caregiver well-being (including mental health assessment); caregiver skills, abilities, and knowledge about caregiving; and positive and negative consequences of caregiving.²⁰ Caregiver needs—including informational, care support, emotional, physical, and social needs—also should be assessed.

Continue to: Tools are available...

Tools are available to facilitate caregiver assessment. For example, the Zarit Burden Interview is a 22-item self-report measure that can be given to the caregiver²¹; shorter versions (4 and 12 items) are also available.²² Another resource available for caregiver assessment guidance is a toolkit developed by the Family Caregiver Alliance.²⁰

Continually assess for changing needs

As the condition of the individual with dementia progresses, it will be important to reassess the caregiver, as stressors and needs will change over the course of the caregiving relationship. Support should be adapted ­accordingly.

In the early stage of dementia, caregivers may need information on disease progression and dementia care planning, ways to navigate the health care system, financial planning, and useful resources. Caregivers also may need emotional support to help them adapt to the role of caregiver, deal with denial, and manage their stress.^23,24

With dementia progression, caregivers may need support related to increased decision-making responsibility, managing challenging behaviors, assisting with ADLs and IADLs, and identifying opportunities to meet personal social and well-being needs. They also may need support to accept the changes they are seeing in the individual with dementia and the shifts they are experiencing in their relationship with him or her.^23,25

In late-stage dementia, caregiver needs tend to shift to determining the need for long-term care placement vs staying at home, end-of-life planning, loneliness, and anticipatory grief.^23,26 Support with managing changing and accumulating stress typically remains a primary need throughout the progression of dementia.²⁷

Continue to: Specific populations have distinct needs

Specific populations have distinct needs. Some caregivers, including members of the LGBTQ+ community and different racial and ethnic groups, as well as caregivers of people with younger-onset dementia, may have additional support needs.²⁸

More than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.

For example, African American and ­Latino caregivers tend to have caregiving relationships of longer duration, requiring more time-­intensive care, but use fewer formal support services than White caregivers.²⁹ Caregivers from non-White racial and ethnic groups also are more likely to experience discrimination when interacting with health care services on behalf of care recipients.³⁰

Having an awareness of potential specialized needs may help to prevent or address potential care disparities, and cultural humility may help to improve caregiver experiences with primary care physicians.

Resources to support caregivers

Family physicians are well situated to provide informational and emotional support for both patients with dementia and their informal care providers.³¹ Given the variability of caregiver concerns, multicomponent interventions addressing informational, self-care, social support, and financial needs often are needed.³¹ Supportive counseling and psychoeducation can help dementia caregivers with stress management, self-care, coping, and skills training—supporting the development of self-efficacy.^32,33

Outside resources. Although significant caregiver support can be provided directly by the physician, caregivers should be connected with outside resources, including support groups, counselors, psychotherapists, financial and legal support, and formal care services.³⁴

Continue to: Psychosocial and complementary interventions

Psychosocial and complementary interventions. Various psychosocial interventions (eg, psychoeducation, cognitive behavioral therapy, support groups) have been found to be beneficial in alleviating caregiver symptoms of depression, anxiety, and stress and improving well-being, perceived burden, and quality of life. However, systematic reviews have found variability in the degree of helpfulness of these interventions.^35,36

Some caregivers and care recipients may benefit from complementary and integrative medicine referrals. Mind–body therapies such as mindfulness, yoga, and Tai Chi have shown some beneficial effects.³⁷

Online resources. Caregivers also can be directed to online resources from organizations such as the Alzheimer’s Association (www.alz.org), the National Institutes of Health (www.alzheimers.gov), and the Family Caregiver Alliance (www.caregiver.org).

In rural settings, such as the one in which this case took place, online resources may decrease some barriers to supporting caregivers.³⁸ Internet-based interventions also have been found to have some benefit for dementia caregivers.^31,39

However, some rural locations continue to have limited reliable Internet services.⁴⁰ In affected areas, a strong relationship with a primary care physician may be even more important to the well-being of caregivers, since other support services may be less accessible.⁴¹

Continue to: Impacts of the pandemic

Impacts of the pandemic. Although our case took place prior to the COVID-19 pandemic, it is important to acknowledge ways the pandemic has impacted informal dementia caregiving.

Caregiver stress, depression, and anxiety increased during the pandemic, and the need for greater home confinement and social ­distancing amplified the negative impact of social isolation, including loneliness, on ­caregivers.^42,43 Caregivers often needed to increase their caregiving responsibilities and had more difficulty with care coordination due to limited access to in-person resources.⁴³ The pandemic led to increased reliance on technology and telehealth in the support of dementia caregivers.⁴³

THE CASE

The physician prescribed mirtazapine for Mr. C, titrating the dose as needed to address depressive symptoms and promote weight gain. The physician connected Mr. C’s father with home health services, including physical therapy for fall risk reduction. Mr. C also hired part-time support to provide additional assistance with ADLs and IADLs, allowing Mr. C to have time to attend to his own needs. Though provided with information about a local caregiver support group, Mr. C chose not to attend. The physician also assisted the family with advanced directives.

African American and Latino caregivers tend to have caregiving relationships of longer duration, requiring more time-intensive care, but they tend to use fewer formal support services than White caregivers.

A particular challenge that occurred during care for the family was addressing Mr. C’s father’s driving capacity, considering his strong need for independence. To address this concern, a family meeting was held with Mr. C, his father, and his siblings from out of town. Although Mr. C’s father was not willing to relinquish his driver’s license during that meeting, he agreed to complete a functional driving assessment.

The physician continued to meet with Mr. C and his father together, as well as with Mr. C individually, to provide supportive counseling as needed. As the father’s dementia progressed and it became more difficult to complete office appointments, the physician transitioned to home visits to provide care until the father’s death.

After the death of Mr. C’s father, the physician continued to serve as Mr. C’s primary care provider.

Keeping the “family”in family medicine

Through longitudinal assessment, needs identification, and provision of relevant information, emotional support, and resources, family physicians can provide care that can improve the quality of life and well-being and help alleviate burden experienced by dementia caregivers. Family physicians also are positioned to provide treatments that can address the negative physical and psychological health outcomes associated with informal dementia caregiving. By building relationships with multiple family members across generations, family physicians can understand the context of caregiving dynamics and work together with individuals with dementia and their caregivers throughout disease progression, providing consistent support to the family unit.

CORRESPONDENCE
Kathleen M. Young, PhD, MPH, Novant Health Family Medicine Wilmington, 2523 Delaney Avenue, Wilmington, NC 28403; Kathleen.Young@novanthealth.org

THE CASE

Sam C* is a 68-year-old man who presented to his family physician in a rural health clinic due to concerns about weight loss. Since his visit 8 months prior, Mr. C unintentionally had lost 20 pounds. Upon questioning, Mr. C also reported feeling irritable and having difficulty with sleep and concentration.

A review of systems did not indicate the presence of infection or other medical conditions. In the 6 years since becoming a patient to the practice, he had reported no chronic health concerns, was taking no medications, and had only been to the clinic for his annual check-up appointments. He completed a Patient Health Questionnaire (PHQ-9) and scored 18, indicating moderately severe depression.

Mr. C had established care with his physician when he moved to the area from out of state so that he could be closer to his parents, who were in their mid-80s at the time. Mr. C’s physician also had been the family physician for his parents for the previous 20 years. Three years prior to Mr. C’s presentation for weight loss, his mother had received a diagnosis of acute leukemia; she died a year later.

Over the past year, Mr. C had needed to take a more active role in the care of his father, who was now in his early 90s. Mr. C’s father, who was previously in excellent health, had begun to develop significant health problems, including degenerative arthritis and progressive vascular dementia. He also had ataxia, leading to poor mobility, and a neurogenic bladder requiring self-catheterization, which required Mr. C’s assistance. Mr. C lived next door to his father and provided frequent assistance with activities of daily living. However, his father, who always had been the dominant figure in the family, was determined to maintain his independence and not relinquish control to others.

The strain of caregiving activities, along with managing his father’s inflexibility, was causing increasing distress for Mr. C. As he told his family physician, “I just don’t know what to do.”

● How would you proceed with this patient?

* The patient’s name has been changed to protect his identity.

It is estimated that more than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.¹ As individuals with dementia progressively decline, they require increased assistance with activities of daily living (ADLs, such as bathing and dressing) and instrumental activities of daily living (IADLs, such as paying bills and using transportation). Most of this assistance comes from informal caregiving provided by family members and friends.

Caregiver burden can be defined as “the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member.”² Caregiver stress has been found to be higher for dementia caregiving than other types of caregiving.³ In particular, caring for someone with greater behavioral and psychological symptoms of dementia (BPSDs) has been associated with higher caregiver burden.^4-7

Beyond the subjective burden of care­giving, there are other potential negative ­consequences for dementia caregivers (see ­TABLE 1^8-14 and TABLE 2^15,16). In addition, caregiver distress is related to a number of care recipient outcomes, including earlier institutionalization, more hospitalizations, more BPSDs, poorer quality of life, and greater likelihood of experiencing elder abuse.¹⁷

Assessment, reassessment are key to meeting needs

Numerous factors can foster caregiver well-­being, including feelings of accomplishment and contribution, a strengthening of the relationship with the care recipient, and feeling supported by friends, family, and formal care systems.^18,19 Family physicians can play an important role by assessing and supporting patients with dementia and their caregivers. Ideally, the individual with dementia and the caregiver will be assessed both together and separately.

Caregiver distress is related to care recipient outcomes, such as earlier institutionalization, more hospitalizations, and poorer quality of life.

A thorough assessment includes gathering information about the context and quality of the caregiving relationship; caregiver perception of the care recipient’s health and functional status; caregiver values and preferences; caregiver well-being (including mental health assessment); caregiver skills, abilities, and knowledge about caregiving; and positive and negative consequences of caregiving.²⁰ Caregiver needs—including informational, care support, emotional, physical, and social needs—also should be assessed.

Continue to: Tools are available...

Tools are available to facilitate caregiver assessment. For example, the Zarit Burden Interview is a 22-item self-report measure that can be given to the caregiver²¹; shorter versions (4 and 12 items) are also available.²² Another resource available for caregiver assessment guidance is a toolkit developed by the Family Caregiver Alliance.²⁰

Continually assess for changing needs

As the condition of the individual with dementia progresses, it will be important to reassess the caregiver, as stressors and needs will change over the course of the caregiving relationship. Support should be adapted ­accordingly.

In the early stage of dementia, caregivers may need information on disease progression and dementia care planning, ways to navigate the health care system, financial planning, and useful resources. Caregivers also may need emotional support to help them adapt to the role of caregiver, deal with denial, and manage their stress.^23,24

With dementia progression, caregivers may need support related to increased decision-making responsibility, managing challenging behaviors, assisting with ADLs and IADLs, and identifying opportunities to meet personal social and well-being needs. They also may need support to accept the changes they are seeing in the individual with dementia and the shifts they are experiencing in their relationship with him or her.^23,25

In late-stage dementia, caregiver needs tend to shift to determining the need for long-term care placement vs staying at home, end-of-life planning, loneliness, and anticipatory grief.^23,26 Support with managing changing and accumulating stress typically remains a primary need throughout the progression of dementia.²⁷

Continue to: Specific populations have distinct needs

Specific populations have distinct needs. Some caregivers, including members of the LGBTQ+ community and different racial and ethnic groups, as well as caregivers of people with younger-onset dementia, may have additional support needs.²⁸

More than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.

For example, African American and ­Latino caregivers tend to have caregiving relationships of longer duration, requiring more time-­intensive care, but use fewer formal support services than White caregivers.²⁹ Caregivers from non-White racial and ethnic groups also are more likely to experience discrimination when interacting with health care services on behalf of care recipients.³⁰

Having an awareness of potential specialized needs may help to prevent or address potential care disparities, and cultural humility may help to improve caregiver experiences with primary care physicians.

Resources to support caregivers

Family physicians are well situated to provide informational and emotional support for both patients with dementia and their informal care providers.³¹ Given the variability of caregiver concerns, multicomponent interventions addressing informational, self-care, social support, and financial needs often are needed.³¹ Supportive counseling and psychoeducation can help dementia caregivers with stress management, self-care, coping, and skills training—supporting the development of self-efficacy.^32,33

Outside resources. Although significant caregiver support can be provided directly by the physician, caregivers should be connected with outside resources, including support groups, counselors, psychotherapists, financial and legal support, and formal care services.³⁴

Continue to: Psychosocial and complementary interventions

Psychosocial and complementary interventions. Various psychosocial interventions (eg, psychoeducation, cognitive behavioral therapy, support groups) have been found to be beneficial in alleviating caregiver symptoms of depression, anxiety, and stress and improving well-being, perceived burden, and quality of life. However, systematic reviews have found variability in the degree of helpfulness of these interventions.^35,36

Some caregivers and care recipients may benefit from complementary and integrative medicine referrals. Mind–body therapies such as mindfulness, yoga, and Tai Chi have shown some beneficial effects.³⁷

Online resources. Caregivers also can be directed to online resources from organizations such as the Alzheimer’s Association (www.alz.org), the National Institutes of Health (www.alzheimers.gov), and the Family Caregiver Alliance (www.caregiver.org).

In rural settings, such as the one in which this case took place, online resources may decrease some barriers to supporting caregivers.³⁸ Internet-based interventions also have been found to have some benefit for dementia caregivers.^31,39

However, some rural locations continue to have limited reliable Internet services.⁴⁰ In affected areas, a strong relationship with a primary care physician may be even more important to the well-being of caregivers, since other support services may be less accessible.⁴¹

Continue to: Impacts of the pandemic

Impacts of the pandemic. Although our case took place prior to the COVID-19 pandemic, it is important to acknowledge ways the pandemic has impacted informal dementia caregiving.

Caregiver stress, depression, and anxiety increased during the pandemic, and the need for greater home confinement and social ­distancing amplified the negative impact of social isolation, including loneliness, on ­caregivers.^42,43 Caregivers often needed to increase their caregiving responsibilities and had more difficulty with care coordination due to limited access to in-person resources.⁴³ The pandemic led to increased reliance on technology and telehealth in the support of dementia caregivers.⁴³

THE CASE

The physician prescribed mirtazapine for Mr. C, titrating the dose as needed to address depressive symptoms and promote weight gain. The physician connected Mr. C’s father with home health services, including physical therapy for fall risk reduction. Mr. C also hired part-time support to provide additional assistance with ADLs and IADLs, allowing Mr. C to have time to attend to his own needs. Though provided with information about a local caregiver support group, Mr. C chose not to attend. The physician also assisted the family with advanced directives.

African American and Latino caregivers tend to have caregiving relationships of longer duration, requiring more time-intensive care, but they tend to use fewer formal support services than White caregivers.

A particular challenge that occurred during care for the family was addressing Mr. C’s father’s driving capacity, considering his strong need for independence. To address this concern, a family meeting was held with Mr. C, his father, and his siblings from out of town. Although Mr. C’s father was not willing to relinquish his driver’s license during that meeting, he agreed to complete a functional driving assessment.

The physician continued to meet with Mr. C and his father together, as well as with Mr. C individually, to provide supportive counseling as needed. As the father’s dementia progressed and it became more difficult to complete office appointments, the physician transitioned to home visits to provide care until the father’s death.

After the death of Mr. C’s father, the physician continued to serve as Mr. C’s primary care provider.

Keeping the “family”in family medicine

Through longitudinal assessment, needs identification, and provision of relevant information, emotional support, and resources, family physicians can provide care that can improve the quality of life and well-being and help alleviate burden experienced by dementia caregivers. Family physicians also are positioned to provide treatments that can address the negative physical and psychological health outcomes associated with informal dementia caregiving. By building relationships with multiple family members across generations, family physicians can understand the context of caregiving dynamics and work together with individuals with dementia and their caregivers throughout disease progression, providing consistent support to the family unit.

CORRESPONDENCE
Kathleen M. Young, PhD, MPH, Novant Health Family Medicine Wilmington, 2523 Delaney Avenue, Wilmington, NC 28403; Kathleen.Young@novanthealth.org

THE CASE

Sam C* is a 68-year-old man who presented to his family physician in a rural health clinic due to concerns about weight loss. Since his visit 8 months prior, Mr. C unintentionally had lost 20 pounds. Upon questioning, Mr. C also reported feeling irritable and having difficulty with sleep and concentration.

A review of systems did not indicate the presence of infection or other medical conditions. In the 6 years since becoming a patient to the practice, he had reported no chronic health concerns, was taking no medications, and had only been to the clinic for his annual check-up appointments. He completed a Patient Health Questionnaire (PHQ-9) and scored 18, indicating moderately severe depression.

Mr. C had established care with his physician when he moved to the area from out of state so that he could be closer to his parents, who were in their mid-80s at the time. Mr. C’s physician also had been the family physician for his parents for the previous 20 years. Three years prior to Mr. C’s presentation for weight loss, his mother had received a diagnosis of acute leukemia; she died a year later.

Over the past year, Mr. C had needed to take a more active role in the care of his father, who was now in his early 90s. Mr. C’s father, who was previously in excellent health, had begun to develop significant health problems, including degenerative arthritis and progressive vascular dementia. He also had ataxia, leading to poor mobility, and a neurogenic bladder requiring self-catheterization, which required Mr. C’s assistance. Mr. C lived next door to his father and provided frequent assistance with activities of daily living. However, his father, who always had been the dominant figure in the family, was determined to maintain his independence and not relinquish control to others.

The strain of caregiving activities, along with managing his father’s inflexibility, was causing increasing distress for Mr. C. As he told his family physician, “I just don’t know what to do.”

● How would you proceed with this patient?

* The patient’s name has been changed to protect his identity.

It is estimated that more than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.¹ As individuals with dementia progressively decline, they require increased assistance with activities of daily living (ADLs, such as bathing and dressing) and instrumental activities of daily living (IADLs, such as paying bills and using transportation). Most of this assistance comes from informal caregiving provided by family members and friends.

Caregiver burden can be defined as “the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member.”² Caregiver stress has been found to be higher for dementia caregiving than other types of caregiving.³ In particular, caring for someone with greater behavioral and psychological symptoms of dementia (BPSDs) has been associated with higher caregiver burden.^4-7

Beyond the subjective burden of care­giving, there are other potential negative ­consequences for dementia caregivers (see ­TABLE 1^8-14 and TABLE 2^15,16). In addition, caregiver distress is related to a number of care recipient outcomes, including earlier institutionalization, more hospitalizations, more BPSDs, poorer quality of life, and greater likelihood of experiencing elder abuse.¹⁷

Assessment, reassessment are key to meeting needs

Numerous factors can foster caregiver well-­being, including feelings of accomplishment and contribution, a strengthening of the relationship with the care recipient, and feeling supported by friends, family, and formal care systems.^18,19 Family physicians can play an important role by assessing and supporting patients with dementia and their caregivers. Ideally, the individual with dementia and the caregiver will be assessed both together and separately.

Caregiver distress is related to care recipient outcomes, such as earlier institutionalization, more hospitalizations, and poorer quality of life.

A thorough assessment includes gathering information about the context and quality of the caregiving relationship; caregiver perception of the care recipient’s health and functional status; caregiver values and preferences; caregiver well-being (including mental health assessment); caregiver skills, abilities, and knowledge about caregiving; and positive and negative consequences of caregiving.²⁰ Caregiver needs—including informational, care support, emotional, physical, and social needs—also should be assessed.

Continue to: Tools are available...

Tools are available to facilitate caregiver assessment. For example, the Zarit Burden Interview is a 22-item self-report measure that can be given to the caregiver²¹; shorter versions (4 and 12 items) are also available.²² Another resource available for caregiver assessment guidance is a toolkit developed by the Family Caregiver Alliance.²⁰

Continually assess for changing needs

As the condition of the individual with dementia progresses, it will be important to reassess the caregiver, as stressors and needs will change over the course of the caregiving relationship. Support should be adapted ­accordingly.

In the early stage of dementia, caregivers may need information on disease progression and dementia care planning, ways to navigate the health care system, financial planning, and useful resources. Caregivers also may need emotional support to help them adapt to the role of caregiver, deal with denial, and manage their stress.^23,24

With dementia progression, caregivers may need support related to increased decision-making responsibility, managing challenging behaviors, assisting with ADLs and IADLs, and identifying opportunities to meet personal social and well-being needs. They also may need support to accept the changes they are seeing in the individual with dementia and the shifts they are experiencing in their relationship with him or her.^23,25

In late-stage dementia, caregiver needs tend to shift to determining the need for long-term care placement vs staying at home, end-of-life planning, loneliness, and anticipatory grief.^23,26 Support with managing changing and accumulating stress typically remains a primary need throughout the progression of dementia.²⁷

Continue to: Specific populations have distinct needs

Specific populations have distinct needs. Some caregivers, including members of the LGBTQ+ community and different racial and ethnic groups, as well as caregivers of people with younger-onset dementia, may have additional support needs.²⁸

More than 11 million Americans provided more than 18 billion hours in unpaid support for individuals with dementia in 2022, averaging 30 hours of care per caregiver per week.

For example, African American and ­Latino caregivers tend to have caregiving relationships of longer duration, requiring more time-­intensive care, but use fewer formal support services than White caregivers.²⁹ Caregivers from non-White racial and ethnic groups also are more likely to experience discrimination when interacting with health care services on behalf of care recipients.³⁰

Having an awareness of potential specialized needs may help to prevent or address potential care disparities, and cultural humility may help to improve caregiver experiences with primary care physicians.

Resources to support caregivers

Family physicians are well situated to provide informational and emotional support for both patients with dementia and their informal care providers.³¹ Given the variability of caregiver concerns, multicomponent interventions addressing informational, self-care, social support, and financial needs often are needed.³¹ Supportive counseling and psychoeducation can help dementia caregivers with stress management, self-care, coping, and skills training—supporting the development of self-efficacy.^32,33

Outside resources. Although significant caregiver support can be provided directly by the physician, caregivers should be connected with outside resources, including support groups, counselors, psychotherapists, financial and legal support, and formal care services.³⁴

Continue to: Psychosocial and complementary interventions

Psychosocial and complementary interventions. Various psychosocial interventions (eg, psychoeducation, cognitive behavioral therapy, support groups) have been found to be beneficial in alleviating caregiver symptoms of depression, anxiety, and stress and improving well-being, perceived burden, and quality of life. However, systematic reviews have found variability in the degree of helpfulness of these interventions.^35,36

Some caregivers and care recipients may benefit from complementary and integrative medicine referrals. Mind–body therapies such as mindfulness, yoga, and Tai Chi have shown some beneficial effects.³⁷

Online resources. Caregivers also can be directed to online resources from organizations such as the Alzheimer’s Association (www.alz.org), the National Institutes of Health (www.alzheimers.gov), and the Family Caregiver Alliance (www.caregiver.org).

In rural settings, such as the one in which this case took place, online resources may decrease some barriers to supporting caregivers.³⁸ Internet-based interventions also have been found to have some benefit for dementia caregivers.^31,39

However, some rural locations continue to have limited reliable Internet services.⁴⁰ In affected areas, a strong relationship with a primary care physician may be even more important to the well-being of caregivers, since other support services may be less accessible.⁴¹

Continue to: Impacts of the pandemic

Impacts of the pandemic. Although our case took place prior to the COVID-19 pandemic, it is important to acknowledge ways the pandemic has impacted informal dementia caregiving.

Caregiver stress, depression, and anxiety increased during the pandemic, and the need for greater home confinement and social ­distancing amplified the negative impact of social isolation, including loneliness, on ­caregivers.^42,43 Caregivers often needed to increase their caregiving responsibilities and had more difficulty with care coordination due to limited access to in-person resources.⁴³ The pandemic led to increased reliance on technology and telehealth in the support of dementia caregivers.⁴³

THE CASE

The physician prescribed mirtazapine for Mr. C, titrating the dose as needed to address depressive symptoms and promote weight gain. The physician connected Mr. C’s father with home health services, including physical therapy for fall risk reduction. Mr. C also hired part-time support to provide additional assistance with ADLs and IADLs, allowing Mr. C to have time to attend to his own needs. Though provided with information about a local caregiver support group, Mr. C chose not to attend. The physician also assisted the family with advanced directives.

African American and Latino caregivers tend to have caregiving relationships of longer duration, requiring more time-intensive care, but they tend to use fewer formal support services than White caregivers.

A particular challenge that occurred during care for the family was addressing Mr. C’s father’s driving capacity, considering his strong need for independence. To address this concern, a family meeting was held with Mr. C, his father, and his siblings from out of town. Although Mr. C’s father was not willing to relinquish his driver’s license during that meeting, he agreed to complete a functional driving assessment.

The physician continued to meet with Mr. C and his father together, as well as with Mr. C individually, to provide supportive counseling as needed. As the father’s dementia progressed and it became more difficult to complete office appointments, the physician transitioned to home visits to provide care until the father’s death.

After the death of Mr. C’s father, the physician continued to serve as Mr. C’s primary care provider.

Keeping the “family”in family medicine

Through longitudinal assessment, needs identification, and provision of relevant information, emotional support, and resources, family physicians can provide care that can improve the quality of life and well-being and help alleviate burden experienced by dementia caregivers. Family physicians also are positioned to provide treatments that can address the negative physical and psychological health outcomes associated with informal dementia caregiving. By building relationships with multiple family members across generations, family physicians can understand the context of caregiving dynamics and work together with individuals with dementia and their caregivers throughout disease progression, providing consistent support to the family unit.

CORRESPONDENCE
Kathleen M. Young, PhD, MPH, Novant Health Family Medicine Wilmington, 2523 Delaney Avenue, Wilmington, NC 28403; Kathleen.Young@novanthealth.org

THE CASE

Janice M* presented to the emergency department (ED) with worsening slurred speech. The 55-year-old patient’s history was significant for diabetes; hypertension; depression; sleep apnea; multiple transient ischemic attacks (TIAs) thought to be stress related; and left lower-extremity weakness secondary to prior infarct. Ms. M had been to the hospital multiple times in the previous 2 to 3 years for similar symptoms. Her most recent visit to the ED had been 2 months earlier.

In the ED, the patient’s NIH stroke score was 1 for the presence of dysarthria, and a code for emergency stroke management was initiated. Ms. M was alert and oriented x 3, with no focal motor or sensory deficits noted. Computed tomography (CT) and CT angiography were negative for any acute abnormality. Throughout the course of the ED visit, her NIH score improved to 0. Ms. M exhibited staccato/stuttering speech, but it was believed that this would likely improve over the next few days.

According to the hospital neurologist, the ED work-up suggested either a TIA, stress-induced psychiatric speech disorder, or conversion disorder. The patient was discharged home in stable condition and was asked to follow up with the outpatient neurologist in 1 week.

Ms. M was seen approximately 2 weeks later in the outpatient neurology stroke ­clinic. Her symptoms had resolved, and she did not report any new or worsening symptoms. An outpatient stroke work-up was initiated, including magnetic resonance imaging (MRI) of the brain, echocardiography, and measurement of low-density lipoprotein and hemoglobin A1C; all results were unremarkable. Given the timeline for symptom improvement and results of the work-up, the patient was given a diagnosis of conversion disorder. Ms. M was encouraged to follow up with her primary care physician (PCP) for further medical management.

● How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, text revision, conversion disorder (also known as functional neurological symptom disorder) is characterized as a somatic symptom and related disorder.¹ The prominent feature shared among disorders in this category is the presence of somatic symptoms that are associated with distress and impairment.

In conversion disorder, the focus is on symptoms that are neurologic in nature but are not due to underlying neurologic disease and are incongruent with typical patterns of presentation for any neurologic condition. Patients with conversion disorder may present with motor symptoms (eg, weakness, paralysis, tremor, dystonia), altered sensory or cognitive function, seizure-like symptoms, alterations in speech, or changes in swallowing.^1,2

For a diagnosis of conversion disorder, the following criteria must be met¹:

• The patient has 1 or more symptoms of altered voluntary motor or sensory function.
• Symptom presentation is incongruent with recognized neurologic or medical disease or conditions.
• Symptoms are not better explained by another medical or mental health condition.
• There is significant distress or impairment in functioning due to symptoms or the deficit.

The etiology of conversion disorder has not been firmly established. While the literature suggests that psychological stressors play a role,^3,4 an effort also has been made to better understand the underlying neural and biological basis. Specifically, studies have utilized brain imaging to explore brain pathways and mechanisms that could account for symptom presentation.^5,6

Prevalence rates for conversion disorder vary depending on the population studied. While it is estimated that 5% of patients in a general hospital setting meet full criteria for conversion disorder,⁷ higher rates may exist in specialty settings; 1 study found that 30% of patients in a neurology specialty clinic exhibited symptoms that were medically unexplained.⁸

Continue to: In primary care...

One study indicated that physicians identified medically unexplained symptoms as the main presenting problem for nearly 20% of patients in a primary care setting.

In primary care, prevalence of conversion disorder can be difficult to pinpoint; however, 1 study indicated that physicians identified medically unexplained symptoms as the main presenting problem for nearly 20% of patients in a primary care setting.⁹ Therefore, it is important for family physicians (FPs) to be familiar with the assessment and treatment of conversion disorder (and other disorders in which medically unexplained symptoms may be at the core of the patient presentation).

The differential: Neurologic and psychiatric conditions

Patients with conversion disorder may present with a variety of neurologic symptoms that can mimic those of organic disease. This can pose a diagnostic challenge, increase the chance of misdiagnosis, and delay treatment.

Motor symptoms may include paralysis, gait disturbance, dysphagia, or aphasia. Patients also may have sensory symptoms, such as blindness, deafness, or anesthesia.^10,11 As a result, it is important to rule out both urgent neurologic presentations, such as TIA, acute stroke, and brain tumor, and other chronic neurologic conditions, including multiple sclerosis, myasthenia gravis, and epilepsy.^11,12

Multiple sclerosis will demonstrate characteristic lesions on MRI that differentiate it from conversion disorder.

Myasthenia gravis is distinguished by positive findings on autoantibodies testing and on electrophysiologic studies.

Continue to: Epilepsy

Epilepsy. Patients with conversion disorder may present with unresponsiveness and abnormal movements, such as generalized limb shaking and hip thrusting, that mimic an epileptic seizure. In contrast to epileptic seizures, psychogenic nonepileptic seizures may last longer, symptoms may wax and wane, and patients generally do not have bowel or bladder incontinence or sustain injury as they would during an actual seizure.¹²

There are several psychiatric/­psychosocial conditions that also should be considered in the differential diagnosis of conversion disorder.

Somatic symptom disorder, like conversion disorder, produces somatic symptoms that can cause significant distress for patients. The difference in the 2 conditions is that symptoms of somatic symptom disorder may be compatible with a recognized neurologic or general medical condition, whereas in conversion disorder, the symptoms are not consistent with a recognized disease.^1,12

Factitious disorder, similar to conversion disorder, can involve neurologic symptoms that are not attributed to disease. However, patients with factitious disorder deliberately simulate symptoms to receive medical care. A thorough clinical interview and physical exam can help to distinguish conversion disorder from factitious disorder.

Malingering is not a psychiatric condition but a behavior that involves intentionally feigning symptoms for the purpose of personal or financial gain. There is no evidence that patients with conversion disorder simulate their symptoms.^12,13

Continue to: Negative results and positive signs point to the Dx

Negative results and positive signs point to the Dx

Conversion disorder is not a diagnosis of exclusion. Diagnosis requires detailed history taking and a thorough neurologic exam. Laboratory testing and neuroimaging are also important, and results will have to be negative to support the diagnosis.

Conversion disorder is not a diagnosis of exclusion; diagnosis requires detailed history taking and a thorough neurologic exam.

Neurologic deficits with conversion disorder do not follow a known neurologic insult.¹⁴ There are many tests that can be used to distinguish functional symptoms vs organic symptoms. Two of the most well-known tests are the Hoover sign and the abductor sign, which will be positive in conversion disorder. Both can be performed easily in an outpatient setting.

The Hoover sign is considered positive when there is weakness of voluntary hip extension in the presence of normal involuntary hip extension during contralateral hip flexion against resistance. According to a meta-­analysis of multiple studies of patients with conversion disorder, the overall estimated sensitivity of this test is 94% and the specificity, 99%.¹⁵

The abductor sign follows the same principle as the Hoover sign: When the patient abducts the nonparetic leg, both the nonparetic and “paretic” leg are strong. When the patient abducts just the “paretic” leg, both legs become weak.¹⁶

Other symptom evaluations. For patients who have functional seizures, video electroencephalography is helpful to distinguish functional seizures from “true” seizures.^17,18 In conversion disorder, functional dysarthria normally resembles a stutter or speech that is extremely slow with long hesitations that are hard to interrupt.¹⁸ Dysphonia and functional dysphagia are also very common functional symptoms. Usually after extensive work-up, no organic cause of the patient’s symptoms is ever found.¹⁸

Continue to: Treatment requires an integrated team approach

Treatment for conversion disorder can be difficult due to the complex and not fully understood etiology of the condition. Due to its multifaceted nature, an integrated team approach can be beneficial at each stage, including assessment and intervention.

Explain the diagnosis clearly. An essential initial step in the treatment of conversion disorder is careful explanation of the diagnosis. Clear explanation of the terminology and presentation of conversion disorder may prevent the patient from misinterpreting their diagnosis as a suggestion that they are feigning or malingering symptoms or feeling that their symptoms or concerns are being dismissed.² Understanding the condition can help improve the likelihood of the patient accepting the treatment plan and help decrease the likelihood of unnecessary testing, health care visits, and consultations. Developing a strong rapport with the patient is key when explaining the diagnosis.

Recommend cognitive behavioral therapy (CBT). In a meta-analysis of 15 randomized controlled trials, CBT significantly reduced somatic, anxious, and depressive symptoms and improved physical functioning in patients with somatoform disorders and medically unexplained symptoms.¹⁹ Another study, utilizing a case series, demonstrated significant improvement in social, emotional, and behavioral functioning in children and adolescents with functional neurologic symptoms (conversion disorder) post–CBT intervention.²⁰

Given that research supports CBT’s effectiveness in the management of conversion disorder, it is beneficial to engage a behavioral health professional as a part of the treatment team to focus on factors such as stress management, development of coping skills, and treatment of underlying psychiatric conditions.

Consider these other options. The addition of medication management can be considered for patients with comorbid psychiatric disorders. Evidence suggests that physical therapy is helpful in the treatment of motor and gait dysfunction seen in conversion disorder.^21,22 The role of hypnosis in the management of conversion disorder has also been studied, but more randomized clinical trials are needed to further explore this treatment.^2,23,24

Continue to: The FP's role in coordination of care

The FP’s role in coordination of care

Conversion disorder can be challenging to diagnose and often involves a multidisciplinary approach. Patients with conversion disorder may see multiple clinicians as they undergo evaluation for their symptoms, but they usually are referred back to their PCP for management and coordination of care. Thus, the FP’s understanding of how the condition is diagnosed and appropriately managed is beneficial.

The prognosis of conversion disorder is associated with symptom duration; thus, consultation between FPs and mental health providers is essential.

Open and effective communication among all members of the health care team can ensure consistency in treatment, a strong patient–provider relationship, favorable prognosis, and prevention of symptom relapse. FPs, by establishing a good rapport with patients, can help them understand the condition and the mind-body connection. Once other diagnoses have been ruled out, the FP can provide reassurance to patients and minimize further diagnostic testing.

The prognosis of conversion disorder is associated with symptom duration²⁵; thus, consultation between FPs and mental health providers is essential. The FP also can be integral in the recognition of psychiatric comorbidities, such as anxiety and depression, helping to ensure that these conditions also are treated appropriately.^25,26

THE CASE

Ms. M was referred to a neuropsychologist for further assessment, and the diagnosis of conversion disorder was confirmed. She was then referred to a family medicine behavioral health psychologist for CBT. The initial consult indicated that psychological stressors were contributing to symptoms, and Ms. M was diagnosed with depression and anxiety as well as conversion disorder.

Treatment started with patient education. The treatment framework was carefully explained to Ms. M, with a focus on identifying possible symptom triggers, helping her build a more effective stress response, increasing skills to more effectively manage stressors, and managing underlying psychiatric disorders (ie, depression, anxiety).

Ms. M continued regular visits with the family medicine behavioral health psychologist for CBT and followed up with her PCP as needed to manage chronic health conditions and stroke risk factors. The patient was able to implement skills discussed in treatment sessions, including identifying triggers and implementing coping skills (eg, managing negative thoughts that contribute to symptoms, setting boundaries) to manage stressors.

Her depressive and anxious symptoms improved, as indicated by symptom measurement tools and self-report. The frequency and severity of episodes of slurred speech and muscle weakness decreased, and the patient reported only 1 ED visit related to speech difficulties in the 2 years while following up with the behavioral health psychologist.

CORRESPONDENCE
Kristen J. Alston, PhD, University of Mississippi Medical Center, 2400 North State Street, Jackson, MS 39216; kalston@umc.edu

THE CASE

Janice M* presented to the emergency department (ED) with worsening slurred speech. The 55-year-old patient’s history was significant for diabetes; hypertension; depression; sleep apnea; multiple transient ischemic attacks (TIAs) thought to be stress related; and left lower-extremity weakness secondary to prior infarct. Ms. M had been to the hospital multiple times in the previous 2 to 3 years for similar symptoms. Her most recent visit to the ED had been 2 months earlier.

In the ED, the patient’s NIH stroke score was 1 for the presence of dysarthria, and a code for emergency stroke management was initiated. Ms. M was alert and oriented x 3, with no focal motor or sensory deficits noted. Computed tomography (CT) and CT angiography were negative for any acute abnormality. Throughout the course of the ED visit, her NIH score improved to 0. Ms. M exhibited staccato/stuttering speech, but it was believed that this would likely improve over the next few days.

According to the hospital neurologist, the ED work-up suggested either a TIA, stress-induced psychiatric speech disorder, or conversion disorder. The patient was discharged home in stable condition and was asked to follow up with the outpatient neurologist in 1 week.

Ms. M was seen approximately 2 weeks later in the outpatient neurology stroke ­clinic. Her symptoms had resolved, and she did not report any new or worsening symptoms. An outpatient stroke work-up was initiated, including magnetic resonance imaging (MRI) of the brain, echocardiography, and measurement of low-density lipoprotein and hemoglobin A1C; all results were unremarkable. Given the timeline for symptom improvement and results of the work-up, the patient was given a diagnosis of conversion disorder. Ms. M was encouraged to follow up with her primary care physician (PCP) for further medical management.

● How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, text revision, conversion disorder (also known as functional neurological symptom disorder) is characterized as a somatic symptom and related disorder.¹ The prominent feature shared among disorders in this category is the presence of somatic symptoms that are associated with distress and impairment.

In conversion disorder, the focus is on symptoms that are neurologic in nature but are not due to underlying neurologic disease and are incongruent with typical patterns of presentation for any neurologic condition. Patients with conversion disorder may present with motor symptoms (eg, weakness, paralysis, tremor, dystonia), altered sensory or cognitive function, seizure-like symptoms, alterations in speech, or changes in swallowing.^1,2

For a diagnosis of conversion disorder, the following criteria must be met¹:

• The patient has 1 or more symptoms of altered voluntary motor or sensory function.
• Symptom presentation is incongruent with recognized neurologic or medical disease or conditions.
• Symptoms are not better explained by another medical or mental health condition.
• There is significant distress or impairment in functioning due to symptoms or the deficit.

The etiology of conversion disorder has not been firmly established. While the literature suggests that psychological stressors play a role,^3,4 an effort also has been made to better understand the underlying neural and biological basis. Specifically, studies have utilized brain imaging to explore brain pathways and mechanisms that could account for symptom presentation.^5,6

Prevalence rates for conversion disorder vary depending on the population studied. While it is estimated that 5% of patients in a general hospital setting meet full criteria for conversion disorder,⁷ higher rates may exist in specialty settings; 1 study found that 30% of patients in a neurology specialty clinic exhibited symptoms that were medically unexplained.⁸

Continue to: In primary care...

One study indicated that physicians identified medically unexplained symptoms as the main presenting problem for nearly 20% of patients in a primary care setting.

In primary care, prevalence of conversion disorder can be difficult to pinpoint; however, 1 study indicated that physicians identified medically unexplained symptoms as the main presenting problem for nearly 20% of patients in a primary care setting.⁹ Therefore, it is important for family physicians (FPs) to be familiar with the assessment and treatment of conversion disorder (and other disorders in which medically unexplained symptoms may be at the core of the patient presentation).

The differential: Neurologic and psychiatric conditions

Patients with conversion disorder may present with a variety of neurologic symptoms that can mimic those of organic disease. This can pose a diagnostic challenge, increase the chance of misdiagnosis, and delay treatment.

Motor symptoms may include paralysis, gait disturbance, dysphagia, or aphasia. Patients also may have sensory symptoms, such as blindness, deafness, or anesthesia.^10,11 As a result, it is important to rule out both urgent neurologic presentations, such as TIA, acute stroke, and brain tumor, and other chronic neurologic conditions, including multiple sclerosis, myasthenia gravis, and epilepsy.^11,12

Multiple sclerosis will demonstrate characteristic lesions on MRI that differentiate it from conversion disorder.

Myasthenia gravis is distinguished by positive findings on autoantibodies testing and on electrophysiologic studies.

Continue to: Epilepsy

Epilepsy. Patients with conversion disorder may present with unresponsiveness and abnormal movements, such as generalized limb shaking and hip thrusting, that mimic an epileptic seizure. In contrast to epileptic seizures, psychogenic nonepileptic seizures may last longer, symptoms may wax and wane, and patients generally do not have bowel or bladder incontinence or sustain injury as they would during an actual seizure.¹²

There are several psychiatric/­psychosocial conditions that also should be considered in the differential diagnosis of conversion disorder.

Somatic symptom disorder, like conversion disorder, produces somatic symptoms that can cause significant distress for patients. The difference in the 2 conditions is that symptoms of somatic symptom disorder may be compatible with a recognized neurologic or general medical condition, whereas in conversion disorder, the symptoms are not consistent with a recognized disease.^1,12

Factitious disorder, similar to conversion disorder, can involve neurologic symptoms that are not attributed to disease. However, patients with factitious disorder deliberately simulate symptoms to receive medical care. A thorough clinical interview and physical exam can help to distinguish conversion disorder from factitious disorder.

Malingering is not a psychiatric condition but a behavior that involves intentionally feigning symptoms for the purpose of personal or financial gain. There is no evidence that patients with conversion disorder simulate their symptoms.^12,13

Continue to: Negative results and positive signs point to the Dx

Negative results and positive signs point to the Dx

Conversion disorder is not a diagnosis of exclusion. Diagnosis requires detailed history taking and a thorough neurologic exam. Laboratory testing and neuroimaging are also important, and results will have to be negative to support the diagnosis.

Conversion disorder is not a diagnosis of exclusion; diagnosis requires detailed history taking and a thorough neurologic exam.

Neurologic deficits with conversion disorder do not follow a known neurologic insult.¹⁴ There are many tests that can be used to distinguish functional symptoms vs organic symptoms. Two of the most well-known tests are the Hoover sign and the abductor sign, which will be positive in conversion disorder. Both can be performed easily in an outpatient setting.

The Hoover sign is considered positive when there is weakness of voluntary hip extension in the presence of normal involuntary hip extension during contralateral hip flexion against resistance. According to a meta-­analysis of multiple studies of patients with conversion disorder, the overall estimated sensitivity of this test is 94% and the specificity, 99%.¹⁵

The abductor sign follows the same principle as the Hoover sign: When the patient abducts the nonparetic leg, both the nonparetic and “paretic” leg are strong. When the patient abducts just the “paretic” leg, both legs become weak.¹⁶

Other symptom evaluations. For patients who have functional seizures, video electroencephalography is helpful to distinguish functional seizures from “true” seizures.^17,18 In conversion disorder, functional dysarthria normally resembles a stutter or speech that is extremely slow with long hesitations that are hard to interrupt.¹⁸ Dysphonia and functional dysphagia are also very common functional symptoms. Usually after extensive work-up, no organic cause of the patient’s symptoms is ever found.¹⁸

Continue to: Treatment requires an integrated team approach

Treatment for conversion disorder can be difficult due to the complex and not fully understood etiology of the condition. Due to its multifaceted nature, an integrated team approach can be beneficial at each stage, including assessment and intervention.

Explain the diagnosis clearly. An essential initial step in the treatment of conversion disorder is careful explanation of the diagnosis. Clear explanation of the terminology and presentation of conversion disorder may prevent the patient from misinterpreting their diagnosis as a suggestion that they are feigning or malingering symptoms or feeling that their symptoms or concerns are being dismissed.² Understanding the condition can help improve the likelihood of the patient accepting the treatment plan and help decrease the likelihood of unnecessary testing, health care visits, and consultations. Developing a strong rapport with the patient is key when explaining the diagnosis.

Recommend cognitive behavioral therapy (CBT). In a meta-analysis of 15 randomized controlled trials, CBT significantly reduced somatic, anxious, and depressive symptoms and improved physical functioning in patients with somatoform disorders and medically unexplained symptoms.¹⁹ Another study, utilizing a case series, demonstrated significant improvement in social, emotional, and behavioral functioning in children and adolescents with functional neurologic symptoms (conversion disorder) post–CBT intervention.²⁰

Given that research supports CBT’s effectiveness in the management of conversion disorder, it is beneficial to engage a behavioral health professional as a part of the treatment team to focus on factors such as stress management, development of coping skills, and treatment of underlying psychiatric conditions.

Consider these other options. The addition of medication management can be considered for patients with comorbid psychiatric disorders. Evidence suggests that physical therapy is helpful in the treatment of motor and gait dysfunction seen in conversion disorder.^21,22 The role of hypnosis in the management of conversion disorder has also been studied, but more randomized clinical trials are needed to further explore this treatment.^2,23,24

Continue to: The FP's role in coordination of care

The FP’s role in coordination of care

Conversion disorder can be challenging to diagnose and often involves a multidisciplinary approach. Patients with conversion disorder may see multiple clinicians as they undergo evaluation for their symptoms, but they usually are referred back to their PCP for management and coordination of care. Thus, the FP’s understanding of how the condition is diagnosed and appropriately managed is beneficial.

The prognosis of conversion disorder is associated with symptom duration; thus, consultation between FPs and mental health providers is essential.

Open and effective communication among all members of the health care team can ensure consistency in treatment, a strong patient–provider relationship, favorable prognosis, and prevention of symptom relapse. FPs, by establishing a good rapport with patients, can help them understand the condition and the mind-body connection. Once other diagnoses have been ruled out, the FP can provide reassurance to patients and minimize further diagnostic testing.

The prognosis of conversion disorder is associated with symptom duration²⁵; thus, consultation between FPs and mental health providers is essential. The FP also can be integral in the recognition of psychiatric comorbidities, such as anxiety and depression, helping to ensure that these conditions also are treated appropriately.^25,26

THE CASE

Ms. M was referred to a neuropsychologist for further assessment, and the diagnosis of conversion disorder was confirmed. She was then referred to a family medicine behavioral health psychologist for CBT. The initial consult indicated that psychological stressors were contributing to symptoms, and Ms. M was diagnosed with depression and anxiety as well as conversion disorder.

Treatment started with patient education. The treatment framework was carefully explained to Ms. M, with a focus on identifying possible symptom triggers, helping her build a more effective stress response, increasing skills to more effectively manage stressors, and managing underlying psychiatric disorders (ie, depression, anxiety).

Ms. M continued regular visits with the family medicine behavioral health psychologist for CBT and followed up with her PCP as needed to manage chronic health conditions and stroke risk factors. The patient was able to implement skills discussed in treatment sessions, including identifying triggers and implementing coping skills (eg, managing negative thoughts that contribute to symptoms, setting boundaries) to manage stressors.

Her depressive and anxious symptoms improved, as indicated by symptom measurement tools and self-report. The frequency and severity of episodes of slurred speech and muscle weakness decreased, and the patient reported only 1 ED visit related to speech difficulties in the 2 years while following up with the behavioral health psychologist.

CORRESPONDENCE
Kristen J. Alston, PhD, University of Mississippi Medical Center, 2400 North State Street, Jackson, MS 39216; kalston@umc.edu

THE CASE

Janice M* presented to the emergency department (ED) with worsening slurred speech. The 55-year-old patient’s history was significant for diabetes; hypertension; depression; sleep apnea; multiple transient ischemic attacks (TIAs) thought to be stress related; and left lower-extremity weakness secondary to prior infarct. Ms. M had been to the hospital multiple times in the previous 2 to 3 years for similar symptoms. Her most recent visit to the ED had been 2 months earlier.

In the ED, the patient’s NIH stroke score was 1 for the presence of dysarthria, and a code for emergency stroke management was initiated. Ms. M was alert and oriented x 3, with no focal motor or sensory deficits noted. Computed tomography (CT) and CT angiography were negative for any acute abnormality. Throughout the course of the ED visit, her NIH score improved to 0. Ms. M exhibited staccato/stuttering speech, but it was believed that this would likely improve over the next few days.

According to the hospital neurologist, the ED work-up suggested either a TIA, stress-induced psychiatric speech disorder, or conversion disorder. The patient was discharged home in stable condition and was asked to follow up with the outpatient neurologist in 1 week.

Ms. M was seen approximately 2 weeks later in the outpatient neurology stroke ­clinic. Her symptoms had resolved, and she did not report any new or worsening symptoms. An outpatient stroke work-up was initiated, including magnetic resonance imaging (MRI) of the brain, echocardiography, and measurement of low-density lipoprotein and hemoglobin A1C; all results were unremarkable. Given the timeline for symptom improvement and results of the work-up, the patient was given a diagnosis of conversion disorder. Ms. M was encouraged to follow up with her primary care physician (PCP) for further medical management.

● How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, text revision, conversion disorder (also known as functional neurological symptom disorder) is characterized as a somatic symptom and related disorder.¹ The prominent feature shared among disorders in this category is the presence of somatic symptoms that are associated with distress and impairment.

In conversion disorder, the focus is on symptoms that are neurologic in nature but are not due to underlying neurologic disease and are incongruent with typical patterns of presentation for any neurologic condition. Patients with conversion disorder may present with motor symptoms (eg, weakness, paralysis, tremor, dystonia), altered sensory or cognitive function, seizure-like symptoms, alterations in speech, or changes in swallowing.^1,2

For a diagnosis of conversion disorder, the following criteria must be met¹:

• The patient has 1 or more symptoms of altered voluntary motor or sensory function.
• Symptom presentation is incongruent with recognized neurologic or medical disease or conditions.
• Symptoms are not better explained by another medical or mental health condition.
• There is significant distress or impairment in functioning due to symptoms or the deficit.

The etiology of conversion disorder has not been firmly established. While the literature suggests that psychological stressors play a role,^3,4 an effort also has been made to better understand the underlying neural and biological basis. Specifically, studies have utilized brain imaging to explore brain pathways and mechanisms that could account for symptom presentation.^5,6

Prevalence rates for conversion disorder vary depending on the population studied. While it is estimated that 5% of patients in a general hospital setting meet full criteria for conversion disorder,⁷ higher rates may exist in specialty settings; 1 study found that 30% of patients in a neurology specialty clinic exhibited symptoms that were medically unexplained.⁸

Continue to: In primary care...

One study indicated that physicians identified medically unexplained symptoms as the main presenting problem for nearly 20% of patients in a primary care setting.

In primary care, prevalence of conversion disorder can be difficult to pinpoint; however, 1 study indicated that physicians identified medically unexplained symptoms as the main presenting problem for nearly 20% of patients in a primary care setting.⁹ Therefore, it is important for family physicians (FPs) to be familiar with the assessment and treatment of conversion disorder (and other disorders in which medically unexplained symptoms may be at the core of the patient presentation).

The differential: Neurologic and psychiatric conditions

Patients with conversion disorder may present with a variety of neurologic symptoms that can mimic those of organic disease. This can pose a diagnostic challenge, increase the chance of misdiagnosis, and delay treatment.

Motor symptoms may include paralysis, gait disturbance, dysphagia, or aphasia. Patients also may have sensory symptoms, such as blindness, deafness, or anesthesia.^10,11 As a result, it is important to rule out both urgent neurologic presentations, such as TIA, acute stroke, and brain tumor, and other chronic neurologic conditions, including multiple sclerosis, myasthenia gravis, and epilepsy.^11,12

Multiple sclerosis will demonstrate characteristic lesions on MRI that differentiate it from conversion disorder.

Myasthenia gravis is distinguished by positive findings on autoantibodies testing and on electrophysiologic studies.

Continue to: Epilepsy

Epilepsy. Patients with conversion disorder may present with unresponsiveness and abnormal movements, such as generalized limb shaking and hip thrusting, that mimic an epileptic seizure. In contrast to epileptic seizures, psychogenic nonepileptic seizures may last longer, symptoms may wax and wane, and patients generally do not have bowel or bladder incontinence or sustain injury as they would during an actual seizure.¹²

There are several psychiatric/­psychosocial conditions that also should be considered in the differential diagnosis of conversion disorder.

Somatic symptom disorder, like conversion disorder, produces somatic symptoms that can cause significant distress for patients. The difference in the 2 conditions is that symptoms of somatic symptom disorder may be compatible with a recognized neurologic or general medical condition, whereas in conversion disorder, the symptoms are not consistent with a recognized disease.^1,12

Factitious disorder, similar to conversion disorder, can involve neurologic symptoms that are not attributed to disease. However, patients with factitious disorder deliberately simulate symptoms to receive medical care. A thorough clinical interview and physical exam can help to distinguish conversion disorder from factitious disorder.

Malingering is not a psychiatric condition but a behavior that involves intentionally feigning symptoms for the purpose of personal or financial gain. There is no evidence that patients with conversion disorder simulate their symptoms.^12,13

Continue to: Negative results and positive signs point to the Dx

Negative results and positive signs point to the Dx

Conversion disorder is not a diagnosis of exclusion. Diagnosis requires detailed history taking and a thorough neurologic exam. Laboratory testing and neuroimaging are also important, and results will have to be negative to support the diagnosis.

Conversion disorder is not a diagnosis of exclusion; diagnosis requires detailed history taking and a thorough neurologic exam.

Neurologic deficits with conversion disorder do not follow a known neurologic insult.¹⁴ There are many tests that can be used to distinguish functional symptoms vs organic symptoms. Two of the most well-known tests are the Hoover sign and the abductor sign, which will be positive in conversion disorder. Both can be performed easily in an outpatient setting.

The Hoover sign is considered positive when there is weakness of voluntary hip extension in the presence of normal involuntary hip extension during contralateral hip flexion against resistance. According to a meta-­analysis of multiple studies of patients with conversion disorder, the overall estimated sensitivity of this test is 94% and the specificity, 99%.¹⁵

The abductor sign follows the same principle as the Hoover sign: When the patient abducts the nonparetic leg, both the nonparetic and “paretic” leg are strong. When the patient abducts just the “paretic” leg, both legs become weak.¹⁶

Other symptom evaluations. For patients who have functional seizures, video electroencephalography is helpful to distinguish functional seizures from “true” seizures.^17,18 In conversion disorder, functional dysarthria normally resembles a stutter or speech that is extremely slow with long hesitations that are hard to interrupt.¹⁸ Dysphonia and functional dysphagia are also very common functional symptoms. Usually after extensive work-up, no organic cause of the patient’s symptoms is ever found.¹⁸

Continue to: Treatment requires an integrated team approach

Treatment for conversion disorder can be difficult due to the complex and not fully understood etiology of the condition. Due to its multifaceted nature, an integrated team approach can be beneficial at each stage, including assessment and intervention.

Explain the diagnosis clearly. An essential initial step in the treatment of conversion disorder is careful explanation of the diagnosis. Clear explanation of the terminology and presentation of conversion disorder may prevent the patient from misinterpreting their diagnosis as a suggestion that they are feigning or malingering symptoms or feeling that their symptoms or concerns are being dismissed.² Understanding the condition can help improve the likelihood of the patient accepting the treatment plan and help decrease the likelihood of unnecessary testing, health care visits, and consultations. Developing a strong rapport with the patient is key when explaining the diagnosis.

Recommend cognitive behavioral therapy (CBT). In a meta-analysis of 15 randomized controlled trials, CBT significantly reduced somatic, anxious, and depressive symptoms and improved physical functioning in patients with somatoform disorders and medically unexplained symptoms.¹⁹ Another study, utilizing a case series, demonstrated significant improvement in social, emotional, and behavioral functioning in children and adolescents with functional neurologic symptoms (conversion disorder) post–CBT intervention.²⁰

Given that research supports CBT’s effectiveness in the management of conversion disorder, it is beneficial to engage a behavioral health professional as a part of the treatment team to focus on factors such as stress management, development of coping skills, and treatment of underlying psychiatric conditions.

Consider these other options. The addition of medication management can be considered for patients with comorbid psychiatric disorders. Evidence suggests that physical therapy is helpful in the treatment of motor and gait dysfunction seen in conversion disorder.^21,22 The role of hypnosis in the management of conversion disorder has also been studied, but more randomized clinical trials are needed to further explore this treatment.^2,23,24

Continue to: The FP's role in coordination of care

The FP’s role in coordination of care

Conversion disorder can be challenging to diagnose and often involves a multidisciplinary approach. Patients with conversion disorder may see multiple clinicians as they undergo evaluation for their symptoms, but they usually are referred back to their PCP for management and coordination of care. Thus, the FP’s understanding of how the condition is diagnosed and appropriately managed is beneficial.

The prognosis of conversion disorder is associated with symptom duration; thus, consultation between FPs and mental health providers is essential.

Open and effective communication among all members of the health care team can ensure consistency in treatment, a strong patient–provider relationship, favorable prognosis, and prevention of symptom relapse. FPs, by establishing a good rapport with patients, can help them understand the condition and the mind-body connection. Once other diagnoses have been ruled out, the FP can provide reassurance to patients and minimize further diagnostic testing.

The prognosis of conversion disorder is associated with symptom duration²⁵; thus, consultation between FPs and mental health providers is essential. The FP also can be integral in the recognition of psychiatric comorbidities, such as anxiety and depression, helping to ensure that these conditions also are treated appropriately.^25,26

THE CASE

Ms. M was referred to a neuropsychologist for further assessment, and the diagnosis of conversion disorder was confirmed. She was then referred to a family medicine behavioral health psychologist for CBT. The initial consult indicated that psychological stressors were contributing to symptoms, and Ms. M was diagnosed with depression and anxiety as well as conversion disorder.

Treatment started with patient education. The treatment framework was carefully explained to Ms. M, with a focus on identifying possible symptom triggers, helping her build a more effective stress response, increasing skills to more effectively manage stressors, and managing underlying psychiatric disorders (ie, depression, anxiety).

Ms. M continued regular visits with the family medicine behavioral health psychologist for CBT and followed up with her PCP as needed to manage chronic health conditions and stroke risk factors. The patient was able to implement skills discussed in treatment sessions, including identifying triggers and implementing coping skills (eg, managing negative thoughts that contribute to symptoms, setting boundaries) to manage stressors.

Her depressive and anxious symptoms improved, as indicated by symptom measurement tools and self-report. The frequency and severity of episodes of slurred speech and muscle weakness decreased, and the patient reported only 1 ED visit related to speech difficulties in the 2 years while following up with the behavioral health psychologist.

CORRESPONDENCE
Kristen J. Alston, PhD, University of Mississippi Medical Center, 2400 North State Street, Jackson, MS 39216; kalston@umc.edu

THE CASE

James B* is a 7-year-old Black child who presented to his primary care physician (PCP) for a well-child visit. During preventive health screening, James’ mother expressed concerns about his behavior, characterizing him as immature, aggressive, destructive, and occasionally self-loathing. She described him as physically uncoordinated, struggling to keep up with his peers in sports, and tiring after 20 minutes of activity. James slept 10 hours nightly but was often restless and snored intermittently. As a second grader, his academic achievement was not progressing, and he had become increasingly inattentive at home and at school. James’ mother offered several examples of his fighting with his siblings, noncompliance with morning routines, and avoidance of learning activities. Additionally, his mother expressed concern that James, as a Black child, might eventually be unfairly labeled as a problem child by his teachers or held back a grade level in school.

Although James did not have a family history of developmental delays or learning disorders, he had not met any milestones on time for gross or fine motor, language, cognitive, and social-emotional skills. James had a history of chronic otitis media, for which pressure equalizer tubes were inserted at age 2 years. He had not had any major physical injuries, psychological trauma, recent life transitions, or adverse childhood events. When asked, James’ mother acknowledged symptoms of maternal depression but alluded to faith-based reasons for not seeking treatment for herself.

James’ physical examination was unremarkable. His height, weight, and vitals were all within normal limits. However, he had some difficulty with verbal articulation and expression and showed signs of a possible vocal tic. Based on James’ presentation, his PCP suspected attention-deficit/hyperactivity disorder (ADHD), as well as neurodevelopmental delays.

The PCP gave James’ mother the Strengths and Difficulties Questionnaire to complete and the Vanderbilt Assessment Scales for her and James’ teacher to fill out independently and return to the clinic. The PCP also instructed James’ mother on how to use a sleep diary to maintain a 1-month log of his sleep patterns and habits. The PCP consulted the integrated behavioral health clinician (IBHC; a clinical social worker embedded in the primary care clinic) and made a warm handoff for the IBHC to further assess James’ maladaptive behaviors and interactions.

● How would you proceed with this patient?

* The patient’s name has been changed to protect his identity.

James is one of more than 6 million children, ages 3 to 17 years, in the United States who live with ADHD.^1,2 ADHD is the most common neurodevelopmental disorder among children, and it affects multiple cognitive and behavioral domains throughout the lifespan.³ Children with ADHD often initially present in primary care settings; thus, PCPs are well positioned to diagnose the disorder and provide longitudinal treatment. This Behavioral Health Consult reviews clinical assessment and practice guidelines, as well as treatment recommendations applicable across different areas of influence—individual, family, community, and systems—for PCPs and IBHCs to use in managing ADHD in children.

ADHD features can vary by age and sex

ADHD is a persistent pattern of inattention or hyperactivity and impulsivity interfering with functioning or development in childhood and functioning later in adulthood. ADHD symptoms manifest prior to age 12 years and must occur in 2 or more settings.⁴ Symptoms should not be better explained by another psychiatric disorder or occur exclusively during the course of another disorder (TABLE 1).⁴

Psychostimulants are preferred for ADHD. However, a variety of medications are available and may prove efficacious as children grow and their symptoms and the capacity to manage them change.

The rate of heritability is high, with significant incidence among first-degree relatives.⁴ Children with ADHD show executive functioning deficits in 1 or more cognitive domains (eg, visuospatial, memory, inhibitions, decision making, and reward regulation).^4,5 The prevalence of ADHD nationally is approximately 9.8% (2.2%, ages 3-5 years; 10%, ages 6-11 years; 13.2%, ages 12-17 years) in children and adolescents; worldwide prevalence is 7.2%.^1,6 It persists among 2.6% to 6.8% of adults worldwide.⁷

Research has shown that boys ages 6 to 11 years are significantly more likely than girls to exhibit attention-getting, externalizing behaviors or conduct problems (eg, hyperactivity, impulsivity, disruption, aggression).^1,6 On the other hand, girls ages 12 to 17 years tend to display internalized (eg, depressed mood, anxiety, low self-esteem) or inattentive behaviors, which clinicians and educators may assess as less severe and warranting fewer supportive measures.¹

The prevalence of ADHD and its associated factors, which evolve through maturation, underscore the importance of persistent, patient-centered, and collaborative PCP and IBHC clinical management.

Continue to: Begin with a screening tool, move to a clinical interview

When caregivers express concerns about their child’s behavior, focus, mood, learning, and socialization, consider initiating a multimodal evaluation for ADHD.^5,8 Embarking on an ADHD assessment can require extended or multiple visits to arrive at the diagnosis, followed by still more visits to confirm a course of care and adjust medications. The integrative care approach described in the patient case and elaborated on later in this article can help facilitate assessment and treatment of ADHD.⁹

Signs of ADHD may be observed at initial screening using a tool such as the Ages & Stages Questionnaire (https://agesandstages.com/products-pricing/asq3/) to reveal indications of norm deviations or delays commensurate with ADHD.¹⁰ However, to substantiate the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision criteria for an accurate diagnosis,⁴ the American Academy of Pediatrics (AAP) clinical practice guidelines require a thorough clinical interview, administration of a standardized assessment tool, and review of objective reports in conjunction with a physical examination and psychosocial evaluation.⁶ Standardized meas­ures of psychological, neurocognitive, and academic achievement reported by caregivers and collateral contacts (eg, teachers, counselors, coaches, care providers) are needed to maximize data objectivity and symptom accuracy across settings (TABLE 2^10-17). Additionally, periodic reassessment is recommended to validate changes in diagnostic subtype and treatment plans due to the chronic and dynamic nature of ADHD.

Consider comorbidities and alternate diagnoses

The diagnostic possibility of ADHD should also prompt consideration of other childhood disorders due to the high potential for comorbidities.^4,6 In a 2016 study, approximately 64% of children with ADHD exhibited another developmental or psychiatric disorder at some point. These disorders included oppositional defiant or conduct disorders (52%), anxiety (33%), depression (17%), and autism spectrum disorder (14%), as well as Tourette syndrome, learning or language disorders, motor delays, substance use disorders, sleep-wake disorders, personality disorders, and ­suicidality.¹⁸

Various medical disorders may manifest with similar signs or symptoms to ADHD, such as thyroid disorders, seizure disorders, adverse drug effects, anemia, genetic anomalies, and others.^6,19Although further research is needed to ascertain potential associations between recurrent otitis media and language delay and later social, cognitive, or attention challenges, early consultation with an otolaryngologist is warranted if such concerns arise in a child’s early years.²⁰ Following the initial assessment, conduct a targeted examination and lab testing to rule out co-occurring conditions or comorbidities.

If there are behavioral concerns or developmental delays associated with tall stature for age or pubertal or testicular development anomalies, consult a geneticist and a developmental pediatrician for targeted testing and neurodevelopmental assessment, respectively. For example, ADHD is a common comorbidity among boys who also have XYY syndrome (Jacobs syndrome). However, due to the variability of symptoms and severity, XYY syndrome often goes undiagnosed, leaving a host of compounding pervasive and developmental problems untreated. Overall, more than two-thirds of patients with ADHD and a co-occurring condition are either inaccurately diagnosed or not referred for additional assessment and adjunct treatment.²¹

Continue to: Risks that arise over time

Risks that arise over time. As ADHD persists, adolescents are at greater risk for psychiatric comorbidities, suicidality, and functional impairments (eg, risky behaviors, occupational problems, truancy, delinquency, and poor self-esteem).^4,8 Adolescents with internalized behaviors are more likely to experience comorbid depressive disorders with increased risk for self-harm.^4,5,8 As adolescents age and their sense of autonomy increases, there is a tendency among those who have received a diagnosis of ADHD to minimize symptoms and decrease the frequency of routine clinic visits along with medication use and treatment compliance.³ Additionally, abuse, misuse, and misappropriation of stimulants among teens and young adults are commonplace.

Wide-scope, multidisciplinary evaluation and close clinical management reduce the potential for imprecise diagnoses, particularly at critical developmental junctures. AAP suggests that PCPs can treat mild and moderate cases of ADHD, but if the treating clinician does not have adequate training, experience, time, or clinical support to manage this condition, early referral is warranted.⁶

A guide to pharmacotherapy

Approximately 77% of children ages 2 to 17 years with a diagnosis of ADHD receive any form of treatment.² Treatment for ADHD can include behavioral therapy and medication.² AAP clinical practice guidelines caution against prescribing medications for children younger than 6 years, relying instead on ­caregiver-, teacher-, or clinician-­administered behavioral strategies and parental training in behavioral modification. For children and adolescents between ages 6 and 18 years, first-line ­treatment includes pharmacotherapy balanced with behavioral therapy, academic modifications, and educational supports (eg, 504 Plan, individualized education plan [IEP]).⁶

Psychostimulants are preferred. These agents (eg, methylphenidate, amphetamine) remain the most efficacious class of medications to reduce hyperactivity and inattentiveness and to improve function. While long-acting psychostimulants are associated with better medication adherence and ­adverse-effect tolerance than are short-acting forms, the latter offer more flexibility in dosing. Start by titrating any stimulant to the lowest effective dose; reassess monthly until potential rebound effects stabilize.

More than twothirds of ADHD patients with a co-occurring condition are either inaccurately diagnosed or not referred for additional assessment and adjunct treatment.

Due to potential adverse effects of this class of medication, screen for any family history or personal risk for structural or electrical cardiac anomalies before starting pharmacotherapy. If any such risks exist, arrange for further cardiac evaluation before initiating medication.⁶ Adverse effects of stimulants include reduced appetite, gastrointestinal symptoms, headaches, anxiousness, parasomnia, tachycardia, and hypertension.

Continue to: Once medication is stabilized...

Once medication is stabilized, monitor treatment 2 to 3 times per year thereafter; watch for longer-term adverse effects such as weight loss, decreased growth rate, and psychiatric comorbidities including the Food and Drug Administration (FDA)’s black box warning of increased risk for suicidality.^5,6,22

Other options. The optimal duration of psychostimulant use remains debatable, as existing evidence does not support its long-term use (10 years) over other interventions, such as nonstimulants and nonmedicinal therapies.²² Although backed by less evidence, additional medications indicated for the treatment of ADHD include: (1) atomoxetine, a selective norepinephrine reuptake inhibitor, and (2) the selective alpha-2 adrenergic agonists, extended-release guanfacine and extended-release clonidine (third-line agent).²²

Adverse effects of these FDA-approved medications are similar to those observed in stimulant medications. Evaluation of cardiac risks is recommended before starting nonstimulant medications. The alpha-2 adrenergic agonists may also be used as adjunct therapies to stimulants. Before stopping an alpha-2 adrenergic agonist, taper the dosage slowly to avoid the risk for rebound hypertension.^6,23 Given the wide variety of medication options and variability of effects, it may be necessary to try different medications as children grow and their symptoms and capacity to manage them change. Additional guidance on FDA-approved medications is available at www.ADHDMedicationGuide.com.

How multilevel care coordination can work

As with other chronic or developmental conditions, the treatment of ADHD requires an interdisciplinary perspective. Continuous, comprehensive case management can help patients overcome obstacles to wellness by balancing the resolution of problems with the development of resilience. Well-documented collaboration of subspecialists, educators, and other stakeholders engaged in ADHD care at multiple levels (individual, family, community, and health care system) increases the likelihood of meaningful, sustainable gains. Using a patient-centered medical home framework, IBHCs or other allied health professionals embedded in, or co-located with, primary care settings can be key to accessing evidence-based treatments that include: psycho-­education and mindfulness-based stress reduction training for caregivers^24,25; occupational,²⁶ cognitive behavioral,²⁷ or family therapies^28,29; neuro-feedback; computer-based attention training; group- or community-based interventions; and academic and social supports.^5,8

Evidence shows that recognition and diagnostic specificity of ADHD and comorbidities— not true prevalence—vary more widely among minority than among nonminority populations.

Treatment approaches that capitalize on children’s neurologic and psychological plasticity and fortify self-efficacy with developmentally appropriate tools empower them to surmount ADHD symptoms over time.²³ Facilitating children’s resilience within a developmental framework and health system’s capacities with socio-culturally relevant approaches, consultation, and research can optimize outcomes and mitigate pervasiveness into adulthood. While the patient is at the center of treatment, it is important to consider the family, school, and communities in which the child lives, learns, and plays. PCPs and IBHCs together can consider a “try and track” method to follow progress, changes, and outcomes over time. With this method, the physician can employ approaches that focus on the patient, caregiver, or the caregiver–child interaction (TABLE 3).

Continue to: Assess patients' needs and the resources available

Assess patients’ needs and the resources available throughout the system of care beyond the primary care setting. Stay abreast of hospital policies, health care insurance coverage, and community- and school-based health programs, and any gaps in adequate and equitable assessment and treatment. For example, while clinical recommendations include psychiatric care, health insurance availability or limits in coverage may dissuade caregivers from seeking help or limit initial or long-term access to resources for help.³⁰ Integrating or advocating for clinic support resources or staffing to assist patients in navigating and mitigating challenges may lessen the management burden and increase the likelihood and longevity of favorable health outcomes.

Steps to ensuring health care equity

Among children of historically marginalized and racial and ethnic minority groups or those of populations affected by health disparities, ADHD symptoms and needs are often masked by structural biases that lead to inequitable care and outcomes, as well as treatment misprioritization or delays.³¹ In particular, evidence has shown that recognition and diagnostic specificity of ADHD and comorbidities, not prevalence, vary more widely among minority than among nonminority populations,³² contributing to the 23% of children with ADHD who receive no treatment at all.²

Understand caregiver concerns. This diagnosis discrepancy is correlated with symptom rating sensitivities (eg, reliability, perception, accuracy) among informants and how caregivers observe, perceive, appreciate, understand, and report behaviors. This discrepancy is also related to cultural belief differences, physician–patient communication variants, and a litany of other socioeconomic determinants.^2,4,31 Caregivers from some cultural, ethnic, or socioeconomic backgrounds may be doubtful of psychiatric assessment, diagnoses, treatment, or medication, and that can impact how children are engaged in clinical and educational settings from the outset.³¹ In the case we described, James’ mother was initially hesitant to explore psychotropic medications and was concerned about stigmatization within the school system. She also seemed to avoid psychiatric treatment for her own depressive symptoms due to cultural and religious beliefs.

Health care provider concerns. Some PCPs may hesitate to explore medications due to limited knowledge and skill in dosing and titrating based on a child’s age, stage, and symptoms, and a perceived lack of competence in managing ADHD. This, too, can indirectly perpetuate existing health disparities. Furthermore, ADHD symptoms may be deemed a secondary or tertiary concern if other complex or urgent medical or undifferentiated developmental problems manifest.

Compounding matters is the limited dissemination of empiric research articles (including randomized controlled trials with representative samples) and limited education on the effectiveness and safety of psychopharmacologic interventions across the lifespan and different cultural and ethnic groups.⁴ Consequently, patients who struggle with unmanaged ADHD symptoms are more likely to have chronic mental health disorders, maladaptive behaviors, and other co-occurring conditions contributing to the complexity of individual needs, health care burdens, or justice system involvement; this is particularly true for those of racial and ethnic minorities.³³

Continue to: Impact of the COVID-19 pandemic

Impact of the COVID-19 pandemic. Patients—particularly those in minority or health disparity populations—who under normal circumstances might have been hesitant to seek help may have felt even more reluctant to do so during the COVID-19 pandemic. We have not yet learned the degree to which limited availability of preventive health care services, decreased routine visits, and fluctuating insurance coverage has impacted the diagnosis, management, or severity of childhood disorders during the past 2 years. Reports of national findings indicate that prolonged periods out of school and reduced daily structure were associated with increased disruptions in mood, sleep, and appetite, particularly among children with pre-existing pathologies. Evidence suggests that school-aged children experienced more anxiety, regressive behaviors, and parasomnias than they did before the pandemic, while adolescents experienced more isolation and depressive symptoms.^34,35

However, there remains a paucity of large-scale or representative studies that use an intersectional lens to examine the influence of COVID-19 on children with ADHD. Therefore, PCPs and IBHCs should refocus attention on possibly undiagnosed, stagnated, or regressed ADHD cases, as well as the adults who care for them. (See “5 ways to overcome Tx barriers and promote health equity.”)

THE CASE

During a follow-up visit 1 month later, the PCP confirmed the clinical impression of ADHD combined presentation with a clinical interview and review of the Strengths and Difficulties Questionnaire completed by James’ mother and the Vanderbilt Assessment Scales completed by James’ mother and teacher. The sleep diary indicated potential problems and apneas worthy of consults for pulmonary function testing, a sleep study, and otolaryngology examination. The PCP informed James’ mother on sleep hygiene strategies and ADHD medication options. She indicated that she wanted to pursue the referrals and behavioral modifications before starting any medication trial.

The PCP referred James to a developmental pediatrician for in-depth assessment of his overall development, learning, and functioning. The developmental pediatrician ultimately confirmed the diagnosis of ADHD, as well as motor and speech delays warranting physical, occupational, and speech therapies. The developmental pediatrician also referred James for targeted genetic testing because she suspected a genetic disorder (eg, XYY syndrome).

The PCP reconnected James and his mother to the IBHC to facilitate subspecialty and school-based care coordination and to provide in-office and home-based interventions. The IBHC assessed James’ emotional dysregulation and impulsivity as adversely impacting his interpersonal relationships and planned to address these issues with behavioral and ­parent–child interaction therapies and skills training during the course of 6 to 12 visits. James’ mother was encouraged to engage his teacher on his academic performance and to initiate a 504 Plan or IEP for in-school accommodations and support. The IBHC aided in tracking his assessments, referrals, follow-ups, access barriers, and treatment goals.

After 6 months, James had made only modest progress, and his mother requested that he begin a trial of medication. Based on his weight, symptoms, behavior patterns, and sleep habits, the PCP prescribed ­extended-release dexmethylphenidate 10 mg each morning, then extended-release clonidine 0.1 mg nightly. With team-based clinical management of pharmacologic, behavioral, physical, speech, and occupational therapies, James’ behavior and sleep improved, and the signs of a vocal tic diminished.

By the next school year, James demonstrated a marked improvement in impulse control, attention, and academic functioning. He followed up with the PCP at least quarterly for reassessment of his symptoms, growth, and experience of adverse effects, and to titrate medications accordingly. James and his mother continued to work closely with the IBHC monthly to engage interventions and to monitor his progress at home and school.

CORRESPONDENCE
Sundania J. W. Wonnum, PhD, LCSW, National Institute on Minority Health and Health Disparities, 6707 Democracy Boulevard, Suite 800, Bethesda, MD 20892; sundania.wonnum@nih.gov

THE CASE

James B* is a 7-year-old Black child who presented to his primary care physician (PCP) for a well-child visit. During preventive health screening, James’ mother expressed concerns about his behavior, characterizing him as immature, aggressive, destructive, and occasionally self-loathing. She described him as physically uncoordinated, struggling to keep up with his peers in sports, and tiring after 20 minutes of activity. James slept 10 hours nightly but was often restless and snored intermittently. As a second grader, his academic achievement was not progressing, and he had become increasingly inattentive at home and at school. James’ mother offered several examples of his fighting with his siblings, noncompliance with morning routines, and avoidance of learning activities. Additionally, his mother expressed concern that James, as a Black child, might eventually be unfairly labeled as a problem child by his teachers or held back a grade level in school.

Although James did not have a family history of developmental delays or learning disorders, he had not met any milestones on time for gross or fine motor, language, cognitive, and social-emotional skills. James had a history of chronic otitis media, for which pressure equalizer tubes were inserted at age 2 years. He had not had any major physical injuries, psychological trauma, recent life transitions, or adverse childhood events. When asked, James’ mother acknowledged symptoms of maternal depression but alluded to faith-based reasons for not seeking treatment for herself.

James’ physical examination was unremarkable. His height, weight, and vitals were all within normal limits. However, he had some difficulty with verbal articulation and expression and showed signs of a possible vocal tic. Based on James’ presentation, his PCP suspected attention-deficit/hyperactivity disorder (ADHD), as well as neurodevelopmental delays.

The PCP gave James’ mother the Strengths and Difficulties Questionnaire to complete and the Vanderbilt Assessment Scales for her and James’ teacher to fill out independently and return to the clinic. The PCP also instructed James’ mother on how to use a sleep diary to maintain a 1-month log of his sleep patterns and habits. The PCP consulted the integrated behavioral health clinician (IBHC; a clinical social worker embedded in the primary care clinic) and made a warm handoff for the IBHC to further assess James’ maladaptive behaviors and interactions.

● How would you proceed with this patient?

* The patient’s name has been changed to protect his identity.

James is one of more than 6 million children, ages 3 to 17 years, in the United States who live with ADHD.^1,2 ADHD is the most common neurodevelopmental disorder among children, and it affects multiple cognitive and behavioral domains throughout the lifespan.³ Children with ADHD often initially present in primary care settings; thus, PCPs are well positioned to diagnose the disorder and provide longitudinal treatment. This Behavioral Health Consult reviews clinical assessment and practice guidelines, as well as treatment recommendations applicable across different areas of influence—individual, family, community, and systems—for PCPs and IBHCs to use in managing ADHD in children.

ADHD features can vary by age and sex

ADHD is a persistent pattern of inattention or hyperactivity and impulsivity interfering with functioning or development in childhood and functioning later in adulthood. ADHD symptoms manifest prior to age 12 years and must occur in 2 or more settings.⁴ Symptoms should not be better explained by another psychiatric disorder or occur exclusively during the course of another disorder (TABLE 1).⁴

Psychostimulants are preferred for ADHD. However, a variety of medications are available and may prove efficacious as children grow and their symptoms and the capacity to manage them change.

The rate of heritability is high, with significant incidence among first-degree relatives.⁴ Children with ADHD show executive functioning deficits in 1 or more cognitive domains (eg, visuospatial, memory, inhibitions, decision making, and reward regulation).^4,5 The prevalence of ADHD nationally is approximately 9.8% (2.2%, ages 3-5 years; 10%, ages 6-11 years; 13.2%, ages 12-17 years) in children and adolescents; worldwide prevalence is 7.2%.^1,6 It persists among 2.6% to 6.8% of adults worldwide.⁷

Research has shown that boys ages 6 to 11 years are significantly more likely than girls to exhibit attention-getting, externalizing behaviors or conduct problems (eg, hyperactivity, impulsivity, disruption, aggression).^1,6 On the other hand, girls ages 12 to 17 years tend to display internalized (eg, depressed mood, anxiety, low self-esteem) or inattentive behaviors, which clinicians and educators may assess as less severe and warranting fewer supportive measures.¹

The prevalence of ADHD and its associated factors, which evolve through maturation, underscore the importance of persistent, patient-centered, and collaborative PCP and IBHC clinical management.

Continue to: Begin with a screening tool, move to a clinical interview

When caregivers express concerns about their child’s behavior, focus, mood, learning, and socialization, consider initiating a multimodal evaluation for ADHD.^5,8 Embarking on an ADHD assessment can require extended or multiple visits to arrive at the diagnosis, followed by still more visits to confirm a course of care and adjust medications. The integrative care approach described in the patient case and elaborated on later in this article can help facilitate assessment and treatment of ADHD.⁹

Signs of ADHD may be observed at initial screening using a tool such as the Ages & Stages Questionnaire (https://agesandstages.com/products-pricing/asq3/) to reveal indications of norm deviations or delays commensurate with ADHD.¹⁰ However, to substantiate the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision criteria for an accurate diagnosis,⁴ the American Academy of Pediatrics (AAP) clinical practice guidelines require a thorough clinical interview, administration of a standardized assessment tool, and review of objective reports in conjunction with a physical examination and psychosocial evaluation.⁶ Standardized meas­ures of psychological, neurocognitive, and academic achievement reported by caregivers and collateral contacts (eg, teachers, counselors, coaches, care providers) are needed to maximize data objectivity and symptom accuracy across settings (TABLE 2^10-17). Additionally, periodic reassessment is recommended to validate changes in diagnostic subtype and treatment plans due to the chronic and dynamic nature of ADHD.

Consider comorbidities and alternate diagnoses

The diagnostic possibility of ADHD should also prompt consideration of other childhood disorders due to the high potential for comorbidities.^4,6 In a 2016 study, approximately 64% of children with ADHD exhibited another developmental or psychiatric disorder at some point. These disorders included oppositional defiant or conduct disorders (52%), anxiety (33%), depression (17%), and autism spectrum disorder (14%), as well as Tourette syndrome, learning or language disorders, motor delays, substance use disorders, sleep-wake disorders, personality disorders, and ­suicidality.¹⁸

Various medical disorders may manifest with similar signs or symptoms to ADHD, such as thyroid disorders, seizure disorders, adverse drug effects, anemia, genetic anomalies, and others.^6,19Although further research is needed to ascertain potential associations between recurrent otitis media and language delay and later social, cognitive, or attention challenges, early consultation with an otolaryngologist is warranted if such concerns arise in a child’s early years.²⁰ Following the initial assessment, conduct a targeted examination and lab testing to rule out co-occurring conditions or comorbidities.

If there are behavioral concerns or developmental delays associated with tall stature for age or pubertal or testicular development anomalies, consult a geneticist and a developmental pediatrician for targeted testing and neurodevelopmental assessment, respectively. For example, ADHD is a common comorbidity among boys who also have XYY syndrome (Jacobs syndrome). However, due to the variability of symptoms and severity, XYY syndrome often goes undiagnosed, leaving a host of compounding pervasive and developmental problems untreated. Overall, more than two-thirds of patients with ADHD and a co-occurring condition are either inaccurately diagnosed or not referred for additional assessment and adjunct treatment.²¹

Continue to: Risks that arise over time

Risks that arise over time. As ADHD persists, adolescents are at greater risk for psychiatric comorbidities, suicidality, and functional impairments (eg, risky behaviors, occupational problems, truancy, delinquency, and poor self-esteem).^4,8 Adolescents with internalized behaviors are more likely to experience comorbid depressive disorders with increased risk for self-harm.^4,5,8 As adolescents age and their sense of autonomy increases, there is a tendency among those who have received a diagnosis of ADHD to minimize symptoms and decrease the frequency of routine clinic visits along with medication use and treatment compliance.³ Additionally, abuse, misuse, and misappropriation of stimulants among teens and young adults are commonplace.

Wide-scope, multidisciplinary evaluation and close clinical management reduce the potential for imprecise diagnoses, particularly at critical developmental junctures. AAP suggests that PCPs can treat mild and moderate cases of ADHD, but if the treating clinician does not have adequate training, experience, time, or clinical support to manage this condition, early referral is warranted.⁶

A guide to pharmacotherapy

Approximately 77% of children ages 2 to 17 years with a diagnosis of ADHD receive any form of treatment.² Treatment for ADHD can include behavioral therapy and medication.² AAP clinical practice guidelines caution against prescribing medications for children younger than 6 years, relying instead on ­caregiver-, teacher-, or clinician-­administered behavioral strategies and parental training in behavioral modification. For children and adolescents between ages 6 and 18 years, first-line ­treatment includes pharmacotherapy balanced with behavioral therapy, academic modifications, and educational supports (eg, 504 Plan, individualized education plan [IEP]).⁶

Psychostimulants are preferred. These agents (eg, methylphenidate, amphetamine) remain the most efficacious class of medications to reduce hyperactivity and inattentiveness and to improve function. While long-acting psychostimulants are associated with better medication adherence and ­adverse-effect tolerance than are short-acting forms, the latter offer more flexibility in dosing. Start by titrating any stimulant to the lowest effective dose; reassess monthly until potential rebound effects stabilize.

More than twothirds of ADHD patients with a co-occurring condition are either inaccurately diagnosed or not referred for additional assessment and adjunct treatment.

Due to potential adverse effects of this class of medication, screen for any family history or personal risk for structural or electrical cardiac anomalies before starting pharmacotherapy. If any such risks exist, arrange for further cardiac evaluation before initiating medication.⁶ Adverse effects of stimulants include reduced appetite, gastrointestinal symptoms, headaches, anxiousness, parasomnia, tachycardia, and hypertension.

Continue to: Once medication is stabilized...

Once medication is stabilized, monitor treatment 2 to 3 times per year thereafter; watch for longer-term adverse effects such as weight loss, decreased growth rate, and psychiatric comorbidities including the Food and Drug Administration (FDA)’s black box warning of increased risk for suicidality.^5,6,22

Other options. The optimal duration of psychostimulant use remains debatable, as existing evidence does not support its long-term use (10 years) over other interventions, such as nonstimulants and nonmedicinal therapies.²² Although backed by less evidence, additional medications indicated for the treatment of ADHD include: (1) atomoxetine, a selective norepinephrine reuptake inhibitor, and (2) the selective alpha-2 adrenergic agonists, extended-release guanfacine and extended-release clonidine (third-line agent).²²

Adverse effects of these FDA-approved medications are similar to those observed in stimulant medications. Evaluation of cardiac risks is recommended before starting nonstimulant medications. The alpha-2 adrenergic agonists may also be used as adjunct therapies to stimulants. Before stopping an alpha-2 adrenergic agonist, taper the dosage slowly to avoid the risk for rebound hypertension.^6,23 Given the wide variety of medication options and variability of effects, it may be necessary to try different medications as children grow and their symptoms and capacity to manage them change. Additional guidance on FDA-approved medications is available at www.ADHDMedicationGuide.com.

How multilevel care coordination can work

As with other chronic or developmental conditions, the treatment of ADHD requires an interdisciplinary perspective. Continuous, comprehensive case management can help patients overcome obstacles to wellness by balancing the resolution of problems with the development of resilience. Well-documented collaboration of subspecialists, educators, and other stakeholders engaged in ADHD care at multiple levels (individual, family, community, and health care system) increases the likelihood of meaningful, sustainable gains. Using a patient-centered medical home framework, IBHCs or other allied health professionals embedded in, or co-located with, primary care settings can be key to accessing evidence-based treatments that include: psycho-­education and mindfulness-based stress reduction training for caregivers^24,25; occupational,²⁶ cognitive behavioral,²⁷ or family therapies^28,29; neuro-feedback; computer-based attention training; group- or community-based interventions; and academic and social supports.^5,8

Evidence shows that recognition and diagnostic specificity of ADHD and comorbidities— not true prevalence—vary more widely among minority than among nonminority populations.

Treatment approaches that capitalize on children’s neurologic and psychological plasticity and fortify self-efficacy with developmentally appropriate tools empower them to surmount ADHD symptoms over time.²³ Facilitating children’s resilience within a developmental framework and health system’s capacities with socio-culturally relevant approaches, consultation, and research can optimize outcomes and mitigate pervasiveness into adulthood. While the patient is at the center of treatment, it is important to consider the family, school, and communities in which the child lives, learns, and plays. PCPs and IBHCs together can consider a “try and track” method to follow progress, changes, and outcomes over time. With this method, the physician can employ approaches that focus on the patient, caregiver, or the caregiver–child interaction (TABLE 3).

Continue to: Assess patients' needs and the resources available

Assess patients’ needs and the resources available throughout the system of care beyond the primary care setting. Stay abreast of hospital policies, health care insurance coverage, and community- and school-based health programs, and any gaps in adequate and equitable assessment and treatment. For example, while clinical recommendations include psychiatric care, health insurance availability or limits in coverage may dissuade caregivers from seeking help or limit initial or long-term access to resources for help.³⁰ Integrating or advocating for clinic support resources or staffing to assist patients in navigating and mitigating challenges may lessen the management burden and increase the likelihood and longevity of favorable health outcomes.

Steps to ensuring health care equity

Among children of historically marginalized and racial and ethnic minority groups or those of populations affected by health disparities, ADHD symptoms and needs are often masked by structural biases that lead to inequitable care and outcomes, as well as treatment misprioritization or delays.³¹ In particular, evidence has shown that recognition and diagnostic specificity of ADHD and comorbidities, not prevalence, vary more widely among minority than among nonminority populations,³² contributing to the 23% of children with ADHD who receive no treatment at all.²

Understand caregiver concerns. This diagnosis discrepancy is correlated with symptom rating sensitivities (eg, reliability, perception, accuracy) among informants and how caregivers observe, perceive, appreciate, understand, and report behaviors. This discrepancy is also related to cultural belief differences, physician–patient communication variants, and a litany of other socioeconomic determinants.^2,4,31 Caregivers from some cultural, ethnic, or socioeconomic backgrounds may be doubtful of psychiatric assessment, diagnoses, treatment, or medication, and that can impact how children are engaged in clinical and educational settings from the outset.³¹ In the case we described, James’ mother was initially hesitant to explore psychotropic medications and was concerned about stigmatization within the school system. She also seemed to avoid psychiatric treatment for her own depressive symptoms due to cultural and religious beliefs.

Health care provider concerns. Some PCPs may hesitate to explore medications due to limited knowledge and skill in dosing and titrating based on a child’s age, stage, and symptoms, and a perceived lack of competence in managing ADHD. This, too, can indirectly perpetuate existing health disparities. Furthermore, ADHD symptoms may be deemed a secondary or tertiary concern if other complex or urgent medical or undifferentiated developmental problems manifest.

Compounding matters is the limited dissemination of empiric research articles (including randomized controlled trials with representative samples) and limited education on the effectiveness and safety of psychopharmacologic interventions across the lifespan and different cultural and ethnic groups.⁴ Consequently, patients who struggle with unmanaged ADHD symptoms are more likely to have chronic mental health disorders, maladaptive behaviors, and other co-occurring conditions contributing to the complexity of individual needs, health care burdens, or justice system involvement; this is particularly true for those of racial and ethnic minorities.³³

Continue to: Impact of the COVID-19 pandemic

Impact of the COVID-19 pandemic. Patients—particularly those in minority or health disparity populations—who under normal circumstances might have been hesitant to seek help may have felt even more reluctant to do so during the COVID-19 pandemic. We have not yet learned the degree to which limited availability of preventive health care services, decreased routine visits, and fluctuating insurance coverage has impacted the diagnosis, management, or severity of childhood disorders during the past 2 years. Reports of national findings indicate that prolonged periods out of school and reduced daily structure were associated with increased disruptions in mood, sleep, and appetite, particularly among children with pre-existing pathologies. Evidence suggests that school-aged children experienced more anxiety, regressive behaviors, and parasomnias than they did before the pandemic, while adolescents experienced more isolation and depressive symptoms.^34,35

However, there remains a paucity of large-scale or representative studies that use an intersectional lens to examine the influence of COVID-19 on children with ADHD. Therefore, PCPs and IBHCs should refocus attention on possibly undiagnosed, stagnated, or regressed ADHD cases, as well as the adults who care for them. (See “5 ways to overcome Tx barriers and promote health equity.”)

THE CASE

During a follow-up visit 1 month later, the PCP confirmed the clinical impression of ADHD combined presentation with a clinical interview and review of the Strengths and Difficulties Questionnaire completed by James’ mother and the Vanderbilt Assessment Scales completed by James’ mother and teacher. The sleep diary indicated potential problems and apneas worthy of consults for pulmonary function testing, a sleep study, and otolaryngology examination. The PCP informed James’ mother on sleep hygiene strategies and ADHD medication options. She indicated that she wanted to pursue the referrals and behavioral modifications before starting any medication trial.

The PCP referred James to a developmental pediatrician for in-depth assessment of his overall development, learning, and functioning. The developmental pediatrician ultimately confirmed the diagnosis of ADHD, as well as motor and speech delays warranting physical, occupational, and speech therapies. The developmental pediatrician also referred James for targeted genetic testing because she suspected a genetic disorder (eg, XYY syndrome).

The PCP reconnected James and his mother to the IBHC to facilitate subspecialty and school-based care coordination and to provide in-office and home-based interventions. The IBHC assessed James’ emotional dysregulation and impulsivity as adversely impacting his interpersonal relationships and planned to address these issues with behavioral and ­parent–child interaction therapies and skills training during the course of 6 to 12 visits. James’ mother was encouraged to engage his teacher on his academic performance and to initiate a 504 Plan or IEP for in-school accommodations and support. The IBHC aided in tracking his assessments, referrals, follow-ups, access barriers, and treatment goals.

After 6 months, James had made only modest progress, and his mother requested that he begin a trial of medication. Based on his weight, symptoms, behavior patterns, and sleep habits, the PCP prescribed ­extended-release dexmethylphenidate 10 mg each morning, then extended-release clonidine 0.1 mg nightly. With team-based clinical management of pharmacologic, behavioral, physical, speech, and occupational therapies, James’ behavior and sleep improved, and the signs of a vocal tic diminished.

By the next school year, James demonstrated a marked improvement in impulse control, attention, and academic functioning. He followed up with the PCP at least quarterly for reassessment of his symptoms, growth, and experience of adverse effects, and to titrate medications accordingly. James and his mother continued to work closely with the IBHC monthly to engage interventions and to monitor his progress at home and school.

CORRESPONDENCE
Sundania J. W. Wonnum, PhD, LCSW, National Institute on Minority Health and Health Disparities, 6707 Democracy Boulevard, Suite 800, Bethesda, MD 20892; sundania.wonnum@nih.gov

THE CASE

James B* is a 7-year-old Black child who presented to his primary care physician (PCP) for a well-child visit. During preventive health screening, James’ mother expressed concerns about his behavior, characterizing him as immature, aggressive, destructive, and occasionally self-loathing. She described him as physically uncoordinated, struggling to keep up with his peers in sports, and tiring after 20 minutes of activity. James slept 10 hours nightly but was often restless and snored intermittently. As a second grader, his academic achievement was not progressing, and he had become increasingly inattentive at home and at school. James’ mother offered several examples of his fighting with his siblings, noncompliance with morning routines, and avoidance of learning activities. Additionally, his mother expressed concern that James, as a Black child, might eventually be unfairly labeled as a problem child by his teachers or held back a grade level in school.

Although James did not have a family history of developmental delays or learning disorders, he had not met any milestones on time for gross or fine motor, language, cognitive, and social-emotional skills. James had a history of chronic otitis media, for which pressure equalizer tubes were inserted at age 2 years. He had not had any major physical injuries, psychological trauma, recent life transitions, or adverse childhood events. When asked, James’ mother acknowledged symptoms of maternal depression but alluded to faith-based reasons for not seeking treatment for herself.

James’ physical examination was unremarkable. His height, weight, and vitals were all within normal limits. However, he had some difficulty with verbal articulation and expression and showed signs of a possible vocal tic. Based on James’ presentation, his PCP suspected attention-deficit/hyperactivity disorder (ADHD), as well as neurodevelopmental delays.

The PCP gave James’ mother the Strengths and Difficulties Questionnaire to complete and the Vanderbilt Assessment Scales for her and James’ teacher to fill out independently and return to the clinic. The PCP also instructed James’ mother on how to use a sleep diary to maintain a 1-month log of his sleep patterns and habits. The PCP consulted the integrated behavioral health clinician (IBHC; a clinical social worker embedded in the primary care clinic) and made a warm handoff for the IBHC to further assess James’ maladaptive behaviors and interactions.

● How would you proceed with this patient?

* The patient’s name has been changed to protect his identity.

James is one of more than 6 million children, ages 3 to 17 years, in the United States who live with ADHD.^1,2 ADHD is the most common neurodevelopmental disorder among children, and it affects multiple cognitive and behavioral domains throughout the lifespan.³ Children with ADHD often initially present in primary care settings; thus, PCPs are well positioned to diagnose the disorder and provide longitudinal treatment. This Behavioral Health Consult reviews clinical assessment and practice guidelines, as well as treatment recommendations applicable across different areas of influence—individual, family, community, and systems—for PCPs and IBHCs to use in managing ADHD in children.

ADHD features can vary by age and sex

ADHD is a persistent pattern of inattention or hyperactivity and impulsivity interfering with functioning or development in childhood and functioning later in adulthood. ADHD symptoms manifest prior to age 12 years and must occur in 2 or more settings.⁴ Symptoms should not be better explained by another psychiatric disorder or occur exclusively during the course of another disorder (TABLE 1).⁴

Psychostimulants are preferred for ADHD. However, a variety of medications are available and may prove efficacious as children grow and their symptoms and the capacity to manage them change.

The rate of heritability is high, with significant incidence among first-degree relatives.⁴ Children with ADHD show executive functioning deficits in 1 or more cognitive domains (eg, visuospatial, memory, inhibitions, decision making, and reward regulation).^4,5 The prevalence of ADHD nationally is approximately 9.8% (2.2%, ages 3-5 years; 10%, ages 6-11 years; 13.2%, ages 12-17 years) in children and adolescents; worldwide prevalence is 7.2%.^1,6 It persists among 2.6% to 6.8% of adults worldwide.⁷

Research has shown that boys ages 6 to 11 years are significantly more likely than girls to exhibit attention-getting, externalizing behaviors or conduct problems (eg, hyperactivity, impulsivity, disruption, aggression).^1,6 On the other hand, girls ages 12 to 17 years tend to display internalized (eg, depressed mood, anxiety, low self-esteem) or inattentive behaviors, which clinicians and educators may assess as less severe and warranting fewer supportive measures.¹

The prevalence of ADHD and its associated factors, which evolve through maturation, underscore the importance of persistent, patient-centered, and collaborative PCP and IBHC clinical management.

Continue to: Begin with a screening tool, move to a clinical interview

When caregivers express concerns about their child’s behavior, focus, mood, learning, and socialization, consider initiating a multimodal evaluation for ADHD.^5,8 Embarking on an ADHD assessment can require extended or multiple visits to arrive at the diagnosis, followed by still more visits to confirm a course of care and adjust medications. The integrative care approach described in the patient case and elaborated on later in this article can help facilitate assessment and treatment of ADHD.⁹

Signs of ADHD may be observed at initial screening using a tool such as the Ages & Stages Questionnaire (https://agesandstages.com/products-pricing/asq3/) to reveal indications of norm deviations or delays commensurate with ADHD.¹⁰ However, to substantiate the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision criteria for an accurate diagnosis,⁴ the American Academy of Pediatrics (AAP) clinical practice guidelines require a thorough clinical interview, administration of a standardized assessment tool, and review of objective reports in conjunction with a physical examination and psychosocial evaluation.⁶ Standardized meas­ures of psychological, neurocognitive, and academic achievement reported by caregivers and collateral contacts (eg, teachers, counselors, coaches, care providers) are needed to maximize data objectivity and symptom accuracy across settings (TABLE 2^10-17). Additionally, periodic reassessment is recommended to validate changes in diagnostic subtype and treatment plans due to the chronic and dynamic nature of ADHD.

Consider comorbidities and alternate diagnoses

The diagnostic possibility of ADHD should also prompt consideration of other childhood disorders due to the high potential for comorbidities.^4,6 In a 2016 study, approximately 64% of children with ADHD exhibited another developmental or psychiatric disorder at some point. These disorders included oppositional defiant or conduct disorders (52%), anxiety (33%), depression (17%), and autism spectrum disorder (14%), as well as Tourette syndrome, learning or language disorders, motor delays, substance use disorders, sleep-wake disorders, personality disorders, and ­suicidality.¹⁸

Various medical disorders may manifest with similar signs or symptoms to ADHD, such as thyroid disorders, seizure disorders, adverse drug effects, anemia, genetic anomalies, and others.^6,19Although further research is needed to ascertain potential associations between recurrent otitis media and language delay and later social, cognitive, or attention challenges, early consultation with an otolaryngologist is warranted if such concerns arise in a child’s early years.²⁰ Following the initial assessment, conduct a targeted examination and lab testing to rule out co-occurring conditions or comorbidities.

If there are behavioral concerns or developmental delays associated with tall stature for age or pubertal or testicular development anomalies, consult a geneticist and a developmental pediatrician for targeted testing and neurodevelopmental assessment, respectively. For example, ADHD is a common comorbidity among boys who also have XYY syndrome (Jacobs syndrome). However, due to the variability of symptoms and severity, XYY syndrome often goes undiagnosed, leaving a host of compounding pervasive and developmental problems untreated. Overall, more than two-thirds of patients with ADHD and a co-occurring condition are either inaccurately diagnosed or not referred for additional assessment and adjunct treatment.²¹

Continue to: Risks that arise over time

Risks that arise over time. As ADHD persists, adolescents are at greater risk for psychiatric comorbidities, suicidality, and functional impairments (eg, risky behaviors, occupational problems, truancy, delinquency, and poor self-esteem).^4,8 Adolescents with internalized behaviors are more likely to experience comorbid depressive disorders with increased risk for self-harm.^4,5,8 As adolescents age and their sense of autonomy increases, there is a tendency among those who have received a diagnosis of ADHD to minimize symptoms and decrease the frequency of routine clinic visits along with medication use and treatment compliance.³ Additionally, abuse, misuse, and misappropriation of stimulants among teens and young adults are commonplace.

Wide-scope, multidisciplinary evaluation and close clinical management reduce the potential for imprecise diagnoses, particularly at critical developmental junctures. AAP suggests that PCPs can treat mild and moderate cases of ADHD, but if the treating clinician does not have adequate training, experience, time, or clinical support to manage this condition, early referral is warranted.⁶

A guide to pharmacotherapy

Approximately 77% of children ages 2 to 17 years with a diagnosis of ADHD receive any form of treatment.² Treatment for ADHD can include behavioral therapy and medication.² AAP clinical practice guidelines caution against prescribing medications for children younger than 6 years, relying instead on ­caregiver-, teacher-, or clinician-­administered behavioral strategies and parental training in behavioral modification. For children and adolescents between ages 6 and 18 years, first-line ­treatment includes pharmacotherapy balanced with behavioral therapy, academic modifications, and educational supports (eg, 504 Plan, individualized education plan [IEP]).⁶

Psychostimulants are preferred. These agents (eg, methylphenidate, amphetamine) remain the most efficacious class of medications to reduce hyperactivity and inattentiveness and to improve function. While long-acting psychostimulants are associated with better medication adherence and ­adverse-effect tolerance than are short-acting forms, the latter offer more flexibility in dosing. Start by titrating any stimulant to the lowest effective dose; reassess monthly until potential rebound effects stabilize.

More than twothirds of ADHD patients with a co-occurring condition are either inaccurately diagnosed or not referred for additional assessment and adjunct treatment.

Due to potential adverse effects of this class of medication, screen for any family history or personal risk for structural or electrical cardiac anomalies before starting pharmacotherapy. If any such risks exist, arrange for further cardiac evaluation before initiating medication.⁶ Adverse effects of stimulants include reduced appetite, gastrointestinal symptoms, headaches, anxiousness, parasomnia, tachycardia, and hypertension.

Continue to: Once medication is stabilized...

Once medication is stabilized, monitor treatment 2 to 3 times per year thereafter; watch for longer-term adverse effects such as weight loss, decreased growth rate, and psychiatric comorbidities including the Food and Drug Administration (FDA)’s black box warning of increased risk for suicidality.^5,6,22

Other options. The optimal duration of psychostimulant use remains debatable, as existing evidence does not support its long-term use (10 years) over other interventions, such as nonstimulants and nonmedicinal therapies.²² Although backed by less evidence, additional medications indicated for the treatment of ADHD include: (1) atomoxetine, a selective norepinephrine reuptake inhibitor, and (2) the selective alpha-2 adrenergic agonists, extended-release guanfacine and extended-release clonidine (third-line agent).²²

Adverse effects of these FDA-approved medications are similar to those observed in stimulant medications. Evaluation of cardiac risks is recommended before starting nonstimulant medications. The alpha-2 adrenergic agonists may also be used as adjunct therapies to stimulants. Before stopping an alpha-2 adrenergic agonist, taper the dosage slowly to avoid the risk for rebound hypertension.^6,23 Given the wide variety of medication options and variability of effects, it may be necessary to try different medications as children grow and their symptoms and capacity to manage them change. Additional guidance on FDA-approved medications is available at www.ADHDMedicationGuide.com.

How multilevel care coordination can work

As with other chronic or developmental conditions, the treatment of ADHD requires an interdisciplinary perspective. Continuous, comprehensive case management can help patients overcome obstacles to wellness by balancing the resolution of problems with the development of resilience. Well-documented collaboration of subspecialists, educators, and other stakeholders engaged in ADHD care at multiple levels (individual, family, community, and health care system) increases the likelihood of meaningful, sustainable gains. Using a patient-centered medical home framework, IBHCs or other allied health professionals embedded in, or co-located with, primary care settings can be key to accessing evidence-based treatments that include: psycho-­education and mindfulness-based stress reduction training for caregivers^24,25; occupational,²⁶ cognitive behavioral,²⁷ or family therapies^28,29; neuro-feedback; computer-based attention training; group- or community-based interventions; and academic and social supports.^5,8

Evidence shows that recognition and diagnostic specificity of ADHD and comorbidities— not true prevalence—vary more widely among minority than among nonminority populations.

Treatment approaches that capitalize on children’s neurologic and psychological plasticity and fortify self-efficacy with developmentally appropriate tools empower them to surmount ADHD symptoms over time.²³ Facilitating children’s resilience within a developmental framework and health system’s capacities with socio-culturally relevant approaches, consultation, and research can optimize outcomes and mitigate pervasiveness into adulthood. While the patient is at the center of treatment, it is important to consider the family, school, and communities in which the child lives, learns, and plays. PCPs and IBHCs together can consider a “try and track” method to follow progress, changes, and outcomes over time. With this method, the physician can employ approaches that focus on the patient, caregiver, or the caregiver–child interaction (TABLE 3).

Continue to: Assess patients' needs and the resources available

Assess patients’ needs and the resources available throughout the system of care beyond the primary care setting. Stay abreast of hospital policies, health care insurance coverage, and community- and school-based health programs, and any gaps in adequate and equitable assessment and treatment. For example, while clinical recommendations include psychiatric care, health insurance availability or limits in coverage may dissuade caregivers from seeking help or limit initial or long-term access to resources for help.³⁰ Integrating or advocating for clinic support resources or staffing to assist patients in navigating and mitigating challenges may lessen the management burden and increase the likelihood and longevity of favorable health outcomes.

Steps to ensuring health care equity

Among children of historically marginalized and racial and ethnic minority groups or those of populations affected by health disparities, ADHD symptoms and needs are often masked by structural biases that lead to inequitable care and outcomes, as well as treatment misprioritization or delays.³¹ In particular, evidence has shown that recognition and diagnostic specificity of ADHD and comorbidities, not prevalence, vary more widely among minority than among nonminority populations,³² contributing to the 23% of children with ADHD who receive no treatment at all.²

Understand caregiver concerns. This diagnosis discrepancy is correlated with symptom rating sensitivities (eg, reliability, perception, accuracy) among informants and how caregivers observe, perceive, appreciate, understand, and report behaviors. This discrepancy is also related to cultural belief differences, physician–patient communication variants, and a litany of other socioeconomic determinants.^2,4,31 Caregivers from some cultural, ethnic, or socioeconomic backgrounds may be doubtful of psychiatric assessment, diagnoses, treatment, or medication, and that can impact how children are engaged in clinical and educational settings from the outset.³¹ In the case we described, James’ mother was initially hesitant to explore psychotropic medications and was concerned about stigmatization within the school system. She also seemed to avoid psychiatric treatment for her own depressive symptoms due to cultural and religious beliefs.

Health care provider concerns. Some PCPs may hesitate to explore medications due to limited knowledge and skill in dosing and titrating based on a child’s age, stage, and symptoms, and a perceived lack of competence in managing ADHD. This, too, can indirectly perpetuate existing health disparities. Furthermore, ADHD symptoms may be deemed a secondary or tertiary concern if other complex or urgent medical or undifferentiated developmental problems manifest.

Compounding matters is the limited dissemination of empiric research articles (including randomized controlled trials with representative samples) and limited education on the effectiveness and safety of psychopharmacologic interventions across the lifespan and different cultural and ethnic groups.⁴ Consequently, patients who struggle with unmanaged ADHD symptoms are more likely to have chronic mental health disorders, maladaptive behaviors, and other co-occurring conditions contributing to the complexity of individual needs, health care burdens, or justice system involvement; this is particularly true for those of racial and ethnic minorities.³³

Continue to: Impact of the COVID-19 pandemic

Impact of the COVID-19 pandemic. Patients—particularly those in minority or health disparity populations—who under normal circumstances might have been hesitant to seek help may have felt even more reluctant to do so during the COVID-19 pandemic. We have not yet learned the degree to which limited availability of preventive health care services, decreased routine visits, and fluctuating insurance coverage has impacted the diagnosis, management, or severity of childhood disorders during the past 2 years. Reports of national findings indicate that prolonged periods out of school and reduced daily structure were associated with increased disruptions in mood, sleep, and appetite, particularly among children with pre-existing pathologies. Evidence suggests that school-aged children experienced more anxiety, regressive behaviors, and parasomnias than they did before the pandemic, while adolescents experienced more isolation and depressive symptoms.^34,35

However, there remains a paucity of large-scale or representative studies that use an intersectional lens to examine the influence of COVID-19 on children with ADHD. Therefore, PCPs and IBHCs should refocus attention on possibly undiagnosed, stagnated, or regressed ADHD cases, as well as the adults who care for them. (See “5 ways to overcome Tx barriers and promote health equity.”)

THE CASE

During a follow-up visit 1 month later, the PCP confirmed the clinical impression of ADHD combined presentation with a clinical interview and review of the Strengths and Difficulties Questionnaire completed by James’ mother and the Vanderbilt Assessment Scales completed by James’ mother and teacher. The sleep diary indicated potential problems and apneas worthy of consults for pulmonary function testing, a sleep study, and otolaryngology examination. The PCP informed James’ mother on sleep hygiene strategies and ADHD medication options. She indicated that she wanted to pursue the referrals and behavioral modifications before starting any medication trial.

The PCP referred James to a developmental pediatrician for in-depth assessment of his overall development, learning, and functioning. The developmental pediatrician ultimately confirmed the diagnosis of ADHD, as well as motor and speech delays warranting physical, occupational, and speech therapies. The developmental pediatrician also referred James for targeted genetic testing because she suspected a genetic disorder (eg, XYY syndrome).

The PCP reconnected James and his mother to the IBHC to facilitate subspecialty and school-based care coordination and to provide in-office and home-based interventions. The IBHC assessed James’ emotional dysregulation and impulsivity as adversely impacting his interpersonal relationships and planned to address these issues with behavioral and ­parent–child interaction therapies and skills training during the course of 6 to 12 visits. James’ mother was encouraged to engage his teacher on his academic performance and to initiate a 504 Plan or IEP for in-school accommodations and support. The IBHC aided in tracking his assessments, referrals, follow-ups, access barriers, and treatment goals.

After 6 months, James had made only modest progress, and his mother requested that he begin a trial of medication. Based on his weight, symptoms, behavior patterns, and sleep habits, the PCP prescribed ­extended-release dexmethylphenidate 10 mg each morning, then extended-release clonidine 0.1 mg nightly. With team-based clinical management of pharmacologic, behavioral, physical, speech, and occupational therapies, James’ behavior and sleep improved, and the signs of a vocal tic diminished.

By the next school year, James demonstrated a marked improvement in impulse control, attention, and academic functioning. He followed up with the PCP at least quarterly for reassessment of his symptoms, growth, and experience of adverse effects, and to titrate medications accordingly. James and his mother continued to work closely with the IBHC monthly to engage interventions and to monitor his progress at home and school.

CORRESPONDENCE
Sundania J. W. Wonnum, PhD, LCSW, National Institute on Minority Health and Health Disparities, 6707 Democracy Boulevard, Suite 800, Bethesda, MD 20892; sundania.wonnum@nih.gov

THE CASE

Alex T,* a 23-year-old first-time mom, presented to the family medicine office for her baby’s 2-week appointment. When asked how she was doing, she began to cry. She said, “I feel crazy” and indicated that she was feeling down and overwhelmed, and was struggling to bond with the baby. She filled out an Edinburgh Postnatal Depression Scale, a standard postpartum depression (PPD) screen; her score, 15 out of 30, was suggestive of depression. Ms. T had been coming to the practice for the past 3 years and had no significant physical or mental health history. She and the baby did not live with the baby’s father, and his degree of presence in their lives varied.

●How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

PPD, traditionally defined as depression in the postpartum period for as long as a year after childbirth, is a common, underdiagnosed outcome of both normal and complicated pregnancies.¹ Peripartum depression, which includes PPD and depression during pregnancy, occurs in approximately 10% of pregnancies.^2,3 When depression first appears in the postpartum period, most women develop symptoms in the first month after delivery (54% of cases) or in the next 2 to 4 months (40%).⁴

The most significant risk factor for PPD is previous depression, peripartum or otherwise.^1,4-6 Other common risk factors include major life events or stressors during or after pregnancy, domestic violence, poor social support, and preterm birth or an infant admission to the neonatal intensive care unit.^1,7 Women with a self-perceived negative birth experience are also likely to experience PPD.⁸ PPD can be associated with significant morbidity and mortality, with suicide a more common cause of maternal mortality than either hemorrhage or hypertensive disorders of pregnancy.⁹

Women with postpartum anemia and low ferritin stores are more prone to depression than are those with normal levels.

Early diagnosis and intervention are crucial to improving patient outcomes. Women with PPD initiate breastfeeding at lower rates and continue for shorter durations.¹⁰ PPD also affects maternal–infant bonding; may adversely affect an infant’s social, cognitive, and language development; and may lead to attachment disorders of infancy.^11,12 In severe cases, it can lead to failure to thrive or infanticide.¹¹

When to screen. The US Preventive Services Task Force (USPSTF) recommends clinicians screen for depression in pregnant and postpartum women (Grade B^a) and for women at increased risk, provide or refer to counseling interventions (Grade B^a).^13,14 The American College of Obstetricians and Gynecologists (ACOG) recommends screening at least once in the postpartum period.¹⁵ Repeat screening at follow-up in the later postpartum period increases the likelihood of diagnosis.¹⁶ Screening for PPD as part of well-child care improves maternal outcomes, and the American Academy of Pediatrics recommends screening at the 1-, 2-, 4-, and 6-month visits.^11,17 These screens are separately billable. Family physicians are uniquely suited to screening at both well-child and postpartum visits, as many women share a medical home with their child, and those who do not are equally willing to receive medical advice from their child’s physician.¹⁸

Continue to: Is it "the blues" or something else? Diagnosing PPD

Many new mothers experience postpartum blues, which manifest as tearfulness, insomnia, irritability, and anxiety. The postpartum blues, however, don’t meet the criteria for major depressive disorder and typically resolve within 14 days of delivery.^19-21 On the other end of the spectrum is postpartum psychosis, which is severe and rare, and can also affect new mothers.

Screening for PPD. The most commonly used screening tool for PPD is the Edinburgh Postnatal Depression Scale (EPDS 10), a free 10-item instrument scored out of 30 possible points, with any score ≥ 13 suggesting PPD.²² The EPDS 10 has a sensitivity of 74% and specificity of 97% for the diagnosis of PPD.²³ Other screening options include the Beck Depression Inventory II (BDI-II) and the Patient Health Questionnaire 9 (PHQ-9). The 21-item BDI-II takes longer to perform and is less sensitive (57%) than the EPDS.¹ The PHQ-9, which asks about some symptoms common to the postpartum period (including sleep changes), is less specific than the EPDS (sensitivity, 75%; specificity, 90%).¹ The EPDS also includes screening questions about anxiety.¹

A positive depression screen, or any positive response to a question on suicidal ideation, should be followed up for confirmation using the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5) criteria for major depressive disorder with peripartum onset.²⁴ Women with PPD should also be asked about current or prior symptoms of bipolar disorder or mania.²⁵ Up to 67% of women with bipolar disorder may relapse postpartum, and they also have an elevated risk of postpartum psychosis.²⁶ The Mood Disorder Questionnaire is a useful tool if a concern for bipolar depression arises.²⁷

Refer any woman in whom bipolar depression is a concern to a clinician experienced with its management. The presence of auditory or visual hallucinations should also be assessed as indicators of postpartum psychosis. Active suicidal or homicidal ideation and postpartum psychosis all require emergent psychiatric care.^21,22 Intimate partner violence may also exist or escalate in the postpartum period and may exacerbate PPD. Both ACOG and the USPSTF recommend screening postpartum women for intimate partner violence.^28,29

Also consider possible medical causes of PPD symptoms. Hypothyroidism in the postpartum period may manifest with some similar symptoms to PPD and is commonly underdiagnosed.^22,30 Women with postpartum anemia and low ferritin stores also have a higher likelihood of PPD (odds ratio, 1.7-4.64), and postpartum iron supplementation may reduce this risk (number needed to treat = 4 in at least 1 randomized controlled trial).³¹ When anemia is present, ensure that it is properly treated.

Continue to: Steps you can take to manage pPD

Refer any woman who has PPD to a qualified therapist whenever possible. Generally, the psychological recommendations for treatment of PPD are very similar to recommendations for general treatment of depression. Psychotherapy on its own is considered a first-line treatment for mild-to-moderate PPD, and medication plus psychotherapy is considered first-line treatment for severe PPD.³² (Worth noting: It may also be useful to offer counseling to a patient who appears distressed, even if she does not fully meet all DSM-5 criteria.)

Of the psychotherapy options, cognitive behavioral therapy is supported by the most evidence.

Of the psychotherapy options, cognitive behavioral therapy (CBT) is supported by the most evidence. There is also evidence for the use of interpersonal therapy (IPT), especially in higher socioeconomic status populations.³³ Key therapeutic targets in IPT are increasing behavioral engagement (eg, reaching out to friends), decreasing negative self-talk (eg, “I am a bad mother”), and negotiating roles and support (eg, both mom’s and family members’ expectations of new motherhood). There is mixed evidence for recommending exercise as a treatment for PPD.^32,34 However, as exercise is a low-risk intervention, you may choose to make that recommendation to patients. Additionally, including partners/support people in treatment/visits for PPD has been shown to increase positive outcomes.³⁵

When medication is considered, selective serotonin reuptake inhibitors (SSRIs) are most commonly used. Research indicates that SSRIs are significantly more effective than placebo for treatment of women with PPD.³⁶ Sertraline, in particular, has shown to be both effective in treating PPD and safe in lactation.^37,38 Dosing and duration of therapy are equivalent to treatment of major depression outside the perinatal period. Consult a trusted source on medications in lactation before prescribing any antidepressant to a breastfeeding mother. One resource is the National Institutes of Health drugs and lactation database (LactMed; www.ncbi.nlm.nih.gov/books/NBK501922/), which provides detailed information on the levels of medications in breastmilk and their potential effects on an infant.

Women with severe, refractory PPD may require hospitalization. Additional treatment options for women with severe, refractory PPD include electroconvulsive therapy or the new medication brexanolone, which is administered as a 60-hour continuous infusion.^39,40

THE CASE

Further conversation with Ms. T revealed that she met the criteria for PPD (major depressive disorder with peripartum onset). She denied suicidal or homicidal ideation and was not experiencing any symptoms of psychosis. A complete blood count was drawn and showed no anemia, and her thyroid-stimulating hormone level was within normal limits. She had a good support network at home, with both her mom and sister taking shifts to help her get some extra rest and allow her to attend medical appointments. She said there was no domestic violence.

Ms. T was introduced to the clinic’s embedded counselor, who scheduled a follow-up appointment within the week to start CBT. After a discussion of risks and benefits, Ms. T also started a low dose of sertraline once daily. At follow-up postpartum visits, she reported significant improvement in her mood. She and her physician decided to taper her SSRI medication at 3 months postpartum. Screens for depression at her infant’s 4- and 6-month well-child visits in the office were reassuringly negative.

^a There is high certainty that the net benefit is moderate, or there is moderate certainty that the net benefit is moderate to substantial.

CORRESPONDENCE
Katherine Buck, PhD, JPS Family Health Center, 1500 South Main Street, 4th Floor, Fort Worth, TX 76110; kbuck@jpshealth.org

THE CASE

Alex T,* a 23-year-old first-time mom, presented to the family medicine office for her baby’s 2-week appointment. When asked how she was doing, she began to cry. She said, “I feel crazy” and indicated that she was feeling down and overwhelmed, and was struggling to bond with the baby. She filled out an Edinburgh Postnatal Depression Scale, a standard postpartum depression (PPD) screen; her score, 15 out of 30, was suggestive of depression. Ms. T had been coming to the practice for the past 3 years and had no significant physical or mental health history. She and the baby did not live with the baby’s father, and his degree of presence in their lives varied.

●How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

PPD, traditionally defined as depression in the postpartum period for as long as a year after childbirth, is a common, underdiagnosed outcome of both normal and complicated pregnancies.¹ Peripartum depression, which includes PPD and depression during pregnancy, occurs in approximately 10% of pregnancies.^2,3 When depression first appears in the postpartum period, most women develop symptoms in the first month after delivery (54% of cases) or in the next 2 to 4 months (40%).⁴

The most significant risk factor for PPD is previous depression, peripartum or otherwise.^1,4-6 Other common risk factors include major life events or stressors during or after pregnancy, domestic violence, poor social support, and preterm birth or an infant admission to the neonatal intensive care unit.^1,7 Women with a self-perceived negative birth experience are also likely to experience PPD.⁸ PPD can be associated with significant morbidity and mortality, with suicide a more common cause of maternal mortality than either hemorrhage or hypertensive disorders of pregnancy.⁹

Women with postpartum anemia and low ferritin stores are more prone to depression than are those with normal levels.

Early diagnosis and intervention are crucial to improving patient outcomes. Women with PPD initiate breastfeeding at lower rates and continue for shorter durations.¹⁰ PPD also affects maternal–infant bonding; may adversely affect an infant’s social, cognitive, and language development; and may lead to attachment disorders of infancy.^11,12 In severe cases, it can lead to failure to thrive or infanticide.¹¹

When to screen. The US Preventive Services Task Force (USPSTF) recommends clinicians screen for depression in pregnant and postpartum women (Grade B^a) and for women at increased risk, provide or refer to counseling interventions (Grade B^a).^13,14 The American College of Obstetricians and Gynecologists (ACOG) recommends screening at least once in the postpartum period.¹⁵ Repeat screening at follow-up in the later postpartum period increases the likelihood of diagnosis.¹⁶ Screening for PPD as part of well-child care improves maternal outcomes, and the American Academy of Pediatrics recommends screening at the 1-, 2-, 4-, and 6-month visits.^11,17 These screens are separately billable. Family physicians are uniquely suited to screening at both well-child and postpartum visits, as many women share a medical home with their child, and those who do not are equally willing to receive medical advice from their child’s physician.¹⁸

Continue to: Is it "the blues" or something else? Diagnosing PPD

Many new mothers experience postpartum blues, which manifest as tearfulness, insomnia, irritability, and anxiety. The postpartum blues, however, don’t meet the criteria for major depressive disorder and typically resolve within 14 days of delivery.^19-21 On the other end of the spectrum is postpartum psychosis, which is severe and rare, and can also affect new mothers.

Screening for PPD. The most commonly used screening tool for PPD is the Edinburgh Postnatal Depression Scale (EPDS 10), a free 10-item instrument scored out of 30 possible points, with any score ≥ 13 suggesting PPD.²² The EPDS 10 has a sensitivity of 74% and specificity of 97% for the diagnosis of PPD.²³ Other screening options include the Beck Depression Inventory II (BDI-II) and the Patient Health Questionnaire 9 (PHQ-9). The 21-item BDI-II takes longer to perform and is less sensitive (57%) than the EPDS.¹ The PHQ-9, which asks about some symptoms common to the postpartum period (including sleep changes), is less specific than the EPDS (sensitivity, 75%; specificity, 90%).¹ The EPDS also includes screening questions about anxiety.¹

A positive depression screen, or any positive response to a question on suicidal ideation, should be followed up for confirmation using the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5) criteria for major depressive disorder with peripartum onset.²⁴ Women with PPD should also be asked about current or prior symptoms of bipolar disorder or mania.²⁵ Up to 67% of women with bipolar disorder may relapse postpartum, and they also have an elevated risk of postpartum psychosis.²⁶ The Mood Disorder Questionnaire is a useful tool if a concern for bipolar depression arises.²⁷

Refer any woman in whom bipolar depression is a concern to a clinician experienced with its management. The presence of auditory or visual hallucinations should also be assessed as indicators of postpartum psychosis. Active suicidal or homicidal ideation and postpartum psychosis all require emergent psychiatric care.^21,22 Intimate partner violence may also exist or escalate in the postpartum period and may exacerbate PPD. Both ACOG and the USPSTF recommend screening postpartum women for intimate partner violence.^28,29

Also consider possible medical causes of PPD symptoms. Hypothyroidism in the postpartum period may manifest with some similar symptoms to PPD and is commonly underdiagnosed.^22,30 Women with postpartum anemia and low ferritin stores also have a higher likelihood of PPD (odds ratio, 1.7-4.64), and postpartum iron supplementation may reduce this risk (number needed to treat = 4 in at least 1 randomized controlled trial).³¹ When anemia is present, ensure that it is properly treated.

Continue to: Steps you can take to manage pPD

Refer any woman who has PPD to a qualified therapist whenever possible. Generally, the psychological recommendations for treatment of PPD are very similar to recommendations for general treatment of depression. Psychotherapy on its own is considered a first-line treatment for mild-to-moderate PPD, and medication plus psychotherapy is considered first-line treatment for severe PPD.³² (Worth noting: It may also be useful to offer counseling to a patient who appears distressed, even if she does not fully meet all DSM-5 criteria.)

Of the psychotherapy options, cognitive behavioral therapy is supported by the most evidence.

Of the psychotherapy options, cognitive behavioral therapy (CBT) is supported by the most evidence. There is also evidence for the use of interpersonal therapy (IPT), especially in higher socioeconomic status populations.³³ Key therapeutic targets in IPT are increasing behavioral engagement (eg, reaching out to friends), decreasing negative self-talk (eg, “I am a bad mother”), and negotiating roles and support (eg, both mom’s and family members’ expectations of new motherhood). There is mixed evidence for recommending exercise as a treatment for PPD.^32,34 However, as exercise is a low-risk intervention, you may choose to make that recommendation to patients. Additionally, including partners/support people in treatment/visits for PPD has been shown to increase positive outcomes.³⁵

When medication is considered, selective serotonin reuptake inhibitors (SSRIs) are most commonly used. Research indicates that SSRIs are significantly more effective than placebo for treatment of women with PPD.³⁶ Sertraline, in particular, has shown to be both effective in treating PPD and safe in lactation.^37,38 Dosing and duration of therapy are equivalent to treatment of major depression outside the perinatal period. Consult a trusted source on medications in lactation before prescribing any antidepressant to a breastfeeding mother. One resource is the National Institutes of Health drugs and lactation database (LactMed; www.ncbi.nlm.nih.gov/books/NBK501922/), which provides detailed information on the levels of medications in breastmilk and their potential effects on an infant.

Women with severe, refractory PPD may require hospitalization. Additional treatment options for women with severe, refractory PPD include electroconvulsive therapy or the new medication brexanolone, which is administered as a 60-hour continuous infusion.^39,40

THE CASE

Further conversation with Ms. T revealed that she met the criteria for PPD (major depressive disorder with peripartum onset). She denied suicidal or homicidal ideation and was not experiencing any symptoms of psychosis. A complete blood count was drawn and showed no anemia, and her thyroid-stimulating hormone level was within normal limits. She had a good support network at home, with both her mom and sister taking shifts to help her get some extra rest and allow her to attend medical appointments. She said there was no domestic violence.

Ms. T was introduced to the clinic’s embedded counselor, who scheduled a follow-up appointment within the week to start CBT. After a discussion of risks and benefits, Ms. T also started a low dose of sertraline once daily. At follow-up postpartum visits, she reported significant improvement in her mood. She and her physician decided to taper her SSRI medication at 3 months postpartum. Screens for depression at her infant’s 4- and 6-month well-child visits in the office were reassuringly negative.

^a There is high certainty that the net benefit is moderate, or there is moderate certainty that the net benefit is moderate to substantial.

CORRESPONDENCE
Katherine Buck, PhD, JPS Family Health Center, 1500 South Main Street, 4th Floor, Fort Worth, TX 76110; kbuck@jpshealth.org

THE CASE

Alex T,* a 23-year-old first-time mom, presented to the family medicine office for her baby’s 2-week appointment. When asked how she was doing, she began to cry. She said, “I feel crazy” and indicated that she was feeling down and overwhelmed, and was struggling to bond with the baby. She filled out an Edinburgh Postnatal Depression Scale, a standard postpartum depression (PPD) screen; her score, 15 out of 30, was suggestive of depression. Ms. T had been coming to the practice for the past 3 years and had no significant physical or mental health history. She and the baby did not live with the baby’s father, and his degree of presence in their lives varied.

●How would you proceed with this patient?

* The patient’s name has been changed to protect her identity.

PPD, traditionally defined as depression in the postpartum period for as long as a year after childbirth, is a common, underdiagnosed outcome of both normal and complicated pregnancies.¹ Peripartum depression, which includes PPD and depression during pregnancy, occurs in approximately 10% of pregnancies.^2,3 When depression first appears in the postpartum period, most women develop symptoms in the first month after delivery (54% of cases) or in the next 2 to 4 months (40%).⁴

The most significant risk factor for PPD is previous depression, peripartum or otherwise.^1,4-6 Other common risk factors include major life events or stressors during or after pregnancy, domestic violence, poor social support, and preterm birth or an infant admission to the neonatal intensive care unit.^1,7 Women with a self-perceived negative birth experience are also likely to experience PPD.⁸ PPD can be associated with significant morbidity and mortality, with suicide a more common cause of maternal mortality than either hemorrhage or hypertensive disorders of pregnancy.⁹

Women with postpartum anemia and low ferritin stores are more prone to depression than are those with normal levels.

Early diagnosis and intervention are crucial to improving patient outcomes. Women with PPD initiate breastfeeding at lower rates and continue for shorter durations.¹⁰ PPD also affects maternal–infant bonding; may adversely affect an infant’s social, cognitive, and language development; and may lead to attachment disorders of infancy.^11,12 In severe cases, it can lead to failure to thrive or infanticide.¹¹

When to screen. The US Preventive Services Task Force (USPSTF) recommends clinicians screen for depression in pregnant and postpartum women (Grade B^a) and for women at increased risk, provide or refer to counseling interventions (Grade B^a).^13,14 The American College of Obstetricians and Gynecologists (ACOG) recommends screening at least once in the postpartum period.¹⁵ Repeat screening at follow-up in the later postpartum period increases the likelihood of diagnosis.¹⁶ Screening for PPD as part of well-child care improves maternal outcomes, and the American Academy of Pediatrics recommends screening at the 1-, 2-, 4-, and 6-month visits.^11,17 These screens are separately billable. Family physicians are uniquely suited to screening at both well-child and postpartum visits, as many women share a medical home with their child, and those who do not are equally willing to receive medical advice from their child’s physician.¹⁸

Continue to: Is it "the blues" or something else? Diagnosing PPD

Many new mothers experience postpartum blues, which manifest as tearfulness, insomnia, irritability, and anxiety. The postpartum blues, however, don’t meet the criteria for major depressive disorder and typically resolve within 14 days of delivery.^19-21 On the other end of the spectrum is postpartum psychosis, which is severe and rare, and can also affect new mothers.

Screening for PPD. The most commonly used screening tool for PPD is the Edinburgh Postnatal Depression Scale (EPDS 10), a free 10-item instrument scored out of 30 possible points, with any score ≥ 13 suggesting PPD.²² The EPDS 10 has a sensitivity of 74% and specificity of 97% for the diagnosis of PPD.²³ Other screening options include the Beck Depression Inventory II (BDI-II) and the Patient Health Questionnaire 9 (PHQ-9). The 21-item BDI-II takes longer to perform and is less sensitive (57%) than the EPDS.¹ The PHQ-9, which asks about some symptoms common to the postpartum period (including sleep changes), is less specific than the EPDS (sensitivity, 75%; specificity, 90%).¹ The EPDS also includes screening questions about anxiety.¹

A positive depression screen, or any positive response to a question on suicidal ideation, should be followed up for confirmation using the Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5) criteria for major depressive disorder with peripartum onset.²⁴ Women with PPD should also be asked about current or prior symptoms of bipolar disorder or mania.²⁵ Up to 67% of women with bipolar disorder may relapse postpartum, and they also have an elevated risk of postpartum psychosis.²⁶ The Mood Disorder Questionnaire is a useful tool if a concern for bipolar depression arises.²⁷

Refer any woman in whom bipolar depression is a concern to a clinician experienced with its management. The presence of auditory or visual hallucinations should also be assessed as indicators of postpartum psychosis. Active suicidal or homicidal ideation and postpartum psychosis all require emergent psychiatric care.^21,22 Intimate partner violence may also exist or escalate in the postpartum period and may exacerbate PPD. Both ACOG and the USPSTF recommend screening postpartum women for intimate partner violence.^28,29

Also consider possible medical causes of PPD symptoms. Hypothyroidism in the postpartum period may manifest with some similar symptoms to PPD and is commonly underdiagnosed.^22,30 Women with postpartum anemia and low ferritin stores also have a higher likelihood of PPD (odds ratio, 1.7-4.64), and postpartum iron supplementation may reduce this risk (number needed to treat = 4 in at least 1 randomized controlled trial).³¹ When anemia is present, ensure that it is properly treated.

Continue to: Steps you can take to manage pPD

Refer any woman who has PPD to a qualified therapist whenever possible. Generally, the psychological recommendations for treatment of PPD are very similar to recommendations for general treatment of depression. Psychotherapy on its own is considered a first-line treatment for mild-to-moderate PPD, and medication plus psychotherapy is considered first-line treatment for severe PPD.³² (Worth noting: It may also be useful to offer counseling to a patient who appears distressed, even if she does not fully meet all DSM-5 criteria.)

Of the psychotherapy options, cognitive behavioral therapy is supported by the most evidence.

Of the psychotherapy options, cognitive behavioral therapy (CBT) is supported by the most evidence. There is also evidence for the use of interpersonal therapy (IPT), especially in higher socioeconomic status populations.³³ Key therapeutic targets in IPT are increasing behavioral engagement (eg, reaching out to friends), decreasing negative self-talk (eg, “I am a bad mother”), and negotiating roles and support (eg, both mom’s and family members’ expectations of new motherhood). There is mixed evidence for recommending exercise as a treatment for PPD.^32,34 However, as exercise is a low-risk intervention, you may choose to make that recommendation to patients. Additionally, including partners/support people in treatment/visits for PPD has been shown to increase positive outcomes.³⁵

When medication is considered, selective serotonin reuptake inhibitors (SSRIs) are most commonly used. Research indicates that SSRIs are significantly more effective than placebo for treatment of women with PPD.³⁶ Sertraline, in particular, has shown to be both effective in treating PPD and safe in lactation.^37,38 Dosing and duration of therapy are equivalent to treatment of major depression outside the perinatal period. Consult a trusted source on medications in lactation before prescribing any antidepressant to a breastfeeding mother. One resource is the National Institutes of Health drugs and lactation database (LactMed; www.ncbi.nlm.nih.gov/books/NBK501922/), which provides detailed information on the levels of medications in breastmilk and their potential effects on an infant.

Women with severe, refractory PPD may require hospitalization. Additional treatment options for women with severe, refractory PPD include electroconvulsive therapy or the new medication brexanolone, which is administered as a 60-hour continuous infusion.^39,40

THE CASE

Further conversation with Ms. T revealed that she met the criteria for PPD (major depressive disorder with peripartum onset). She denied suicidal or homicidal ideation and was not experiencing any symptoms of psychosis. A complete blood count was drawn and showed no anemia, and her thyroid-stimulating hormone level was within normal limits. She had a good support network at home, with both her mom and sister taking shifts to help her get some extra rest and allow her to attend medical appointments. She said there was no domestic violence.

Ms. T was introduced to the clinic’s embedded counselor, who scheduled a follow-up appointment within the week to start CBT. After a discussion of risks and benefits, Ms. T also started a low dose of sertraline once daily. At follow-up postpartum visits, she reported significant improvement in her mood. She and her physician decided to taper her SSRI medication at 3 months postpartum. Screens for depression at her infant’s 4- and 6-month well-child visits in the office were reassuringly negative.

^a There is high certainty that the net benefit is moderate, or there is moderate certainty that the net benefit is moderate to substantial.

CORRESPONDENCE
Katherine Buck, PhD, JPS Family Health Center, 1500 South Main Street, 4th Floor, Fort Worth, TX 76110; kbuck@jpshealth.org