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Multiple sclerosis (MS) is the most common progressive neurologic disease of young adults, affecting 350,000 to 400,000 people in the U.S.1 The disease most commonly presents with intermittent relapses and evolves to a progressive form. Common symptoms include weakness, sensory loss, vision disturbances, ataxia, bladder dysfunction, cognitive deficits, and fatigue. A thoughtful multidisciplinary approach is essential for patients with MS who live with an unpredictable disease, numerous secondary symptoms, and the fear of debilitating progression. The goal is to maintain good quality of life (QOL) for patients with MS.

This article responds to the issues presented by a young patient recently released from active-duty military service and illustrate the power of a team
approach to managing the care of patients with MS. The 3 sections are written from the perspectives of (1) neurologists and physiatrists; (2) nurse practitioners; and (3) psychologists and also represent contributions of each discipline toward the goal of maintaining QOL for patients with MS. Although these health care specialists are highlighted, many more were involved in the care of this patient and are not included due to space constraints.

Case Presentation

William is a 31-year-old African American man who began experiencing headaches, occasional imbalance, periods of confusion, and mental fogginess following discharge from active duty 5 years ago. William had been deployed to Afghanistan and was exposed to at least 1 improvised explosive device blast while there. He did not disclose to army physicians a 24-hour loss of vision in his right eye while driving a tactical vehicle in Kandahar, Afghanistan. The patient thought his vision changes were caused by stress and worried that he would be removed from patrol duties if he reported the problem. At the time of his discharge, William was diagnosed with mild traumatic brain injury from blast exposure.

After discharge, William sought care in the private sector but felt providers assumed all his symptoms were the result of depression or posttraumatic stress disorder. He began noticing problems at his new job: missing deadlines, forgetting conversations, and having difficulty making decisions. William’s gait became clumsy, and he occasionally tripped and ran into walls. He worried that his supervisor and colleagues would discover his problems, so he quit his job. William knew something was wrong and wanted a provider who would understand him. He decided to take advantage of the VA health care system and its promise of care for Operation Enduring Freedom/Operation Iraqi Freedom veterans. He had an initial evaluation with his primary care Patient Aligned Care Team (PACT), which noted deficits on his neurologic examination and referred him to the neurology clinic affiliated with the MS Centers of Excellence (MSCoE).2

William’s neurologic examination was significant for psychomotor slowing, memory loss, cerebellar ataxia, and lower extremity spasticity. Magnetic resonance imaging (MRI) of the brain and spinal cord were obtained as recommended by the Consortium of MS Centers guidelines.3 The MRI showed 12 high-frequency T2 lesions in the periventricular regions bilaterally and cerebellum. One lesion was gadolinium enhanced. Two additional high T2 lesions were noted in the upper cervical spinal cord. After ruling out mimics, William was diagnosed with relapsing remitting MS, based on McDonald Criteria.4 His Expanded Disability Status score was 3.0, and deficits were documented in the pyramidal, cerebellar, and cerebral functional systems.5 William’s history and symptoms, blood, and cerebrospinal fluid studies were consistent with the typical pattern of relapses and remissions with neurologic symptoms separated in space and time.

The neurologist gave William some context to the diagnosis. He noted the changing epidemiology of the disease and that African Americans are considered a highrisk group for rapid progression of MS symptoms.6-8 A progress note and MS Assessment Tool were completed in the Computerized Patient Record System (CPRS)—an annual requirement recommended by the Multiple Sclerosis System of Care Procedures.9

Symptom Management

All FDA-approved MS disease-modifying therapies (DMT) are available within the VA MSCoE network. After a discussion of risks and benefits with William, the neurologist recommended 2 options for therapy. One option was more aggressive and had the greatest efficacy in a randomized controlled trial, yet a higher risk for adverse events (AEs). The other option had modest efficacy and favorable long-term safety data. After further discussion with his neurologist, William indicated he wanted to avoid risks and preferred medication with a long track record for success and safety. He selected an injectable DMT.

William returned to the clinic 3 months later and reported no new or worsening neurologic symptoms and stated that he was “fine.” However, in a review of his MS symptoms, the neurologist discovered gait ataxia, bladder urgency, and constipation. On further questioning, William admitted to experiencing excessive fatigue, an inability to go to or stay asleep, and difficulty in finishing tasks. William also indicated that he had forgotten to take
his DMT as prescribed, had a fear of injecting himself, and had painful injection site reactions. The neurologist referred him for a bladder ultrasound and for urinalysis and urine cultures, as well as for more extensive cognitive testing with a neuropsychologist and for gait assessment with the physiatrist.

William reported 2 recent falls to the physiatrist, both occurring while walking on his lawn to get the mail, neither resulting in significant injury. He reported using walls and furniture to maintain balance at home. Although he continued to insist that he was fine, further questioning revealed that he at times avoided leaving home due to a fear of falling.

A focused physical examination consisting of an assessment of lower limb muscular strength, coordination, sensation, and spasticity helped identify issues that were causing his impaired gait. Additionally, the impact of changes in vision, cognition, and fatigue were explored, because they also contributed to falls and impacted use of mobility assistive devices.

William had normal strength except for mild weakness in his left ankle dorsiflexors, intact sensation, impaired heel-to-shin performance, and minimal resistance of his hip adductors. A wide base of support, short stride length, and a slow cadence characterized his gait. His average of two 25-foot walk tests was 15 seconds, and by the end of his second trial, he had mild foot drop.

Impairments in gait are typically multifactorial, so treatment plans often consider multiple issues. Because William was able to use a wide base of support to maintain his balance and quality of gait, it did not seem that spasticity was impairing his function. Therefore, an oral spasticity agent was not indicated, although a stretching program was started to prevent potential future complications related to spasticity.

An ankle-foot orthosis could address William’s foot drop. An assistive device, such as a cane or walker, could also help minimize falls associated with ataxia. It is important to screen patients for psychological impacts of loss of function and psychological barriers to the use of assistive devices; referral to a rehabilitation psychologist may be warranted. Last, William’s walking speed was slightly impaired. When speed of walking is a concern, patients might benefit from a trial of dalfampridine once walking safety has been optimized.

MS Care Models

Because MS is a dynamic disease, producing multifocal neurologic deficits and disability, a wide range of health care specialists are required to assist in MS care throughout the life of the patient. The neurologist is typically the principal caregiver, but referrals to rehabilitation specialists, psychologists, ophthalmologists, urologists, speech pathologists, wound specialists, and social workers are common. Multiple sclerosis advocacy groups within the U.S. frequently promote multidisciplinary care. Yet few attempts have been made to define multidisciplinary MS care models or to test their effectiveness. Like other chronic conditions, coordination and continuity of care for patients with MS are often suboptimal.

About 30,000 patients with MS use the VA health care system. Treatment takes place largely in outpatient clinics. Patients with MS require more visits per person than do all but a handful of other patient populations. Multiple sclerosis therapy includes complex and expensive pharmacologic agents as well as multidisciplinary medical and rehabilitation services and assistive technology. In 2003, after surveys showed wide and unexplained variations across the VA in the care of patients with MS, 2 MSCoE coordinating centers were established to improve access to MS specialty care, develop national standards of care, and implement those standards through a network of regional MS programs.

With input from the MSCoE and a network of more than 70 VA MS programs, the VA Central Office released a handbook for MS care in December 2009. The VA handbook Multiple Sclerosis System of Care Procedures is the first MS health care policy directive that has been created, outlining a comprehensive plan of care for patients with MS.9 The handbook describes the diagnostic and therapeutic health care services that are required by patients with MS, including primary care, MS specialty care, rehabilitation, palliative care, respite care, home care, long-term care, mental health care, social work services, telehealth services, and access to disease-modifying and symptomatic pharmacologic therapies.

According to the MS handbook, every patient with MS should receive an annual evaluation in which the care plan is reviewed with a provider who is knowledgeable about MS. The provider then completes the required MS Assessment Tool within the CPRS. The annual visit and MS Assessment Tool help to identify patients with MS, track medication AEs, and populate the VA national MS surveillance registry. Ideally, this evaluation takes place in
a face-to-face visit with a MS subspecialist. However, this requirement also could be satisfied by a visit with another provider knowledgeable about MS or through a video or telephone telehealth interview.

The location of care should be dictated by the needs of the patient and be as convenient as possible. To support this, a regional hub-and-spoke network has been outlined. Each VISN supports at least 1 MS regional program (hub site). The MS regional program team consists of a physician with MS expertise, a nurse, a social worker, and access to specialty care services. These teams lead and coordinate integrated MS care at the local medical center and assist in the care of patients with MS at remote facilities within the VISN.

Facilities without a MS regional program are designated as spoke sites that have a designated MS care coordinator to assist with care at that facility. Spoke sites work with the regional hub to deliver MS care to the local population. Consultations from the closest MS regional center may be provided by telephone, telehealth, or a live visit. The level of MS care for regional centers is influenced by the patient’s MS stage and the location. Different MS care models that incorporate more consultative and telehealth approaches may need to be developed for patients with MS in rural areas with limited access to specialists.

Click here to read the digital edition.

References

1. Anderson DW, Ellenberg JH, Leventhan CM, Reingold SC, Rodriguez M, Silberberg DH. Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol. 1992;31(3):333-336.

2. Klein S. The Veterans Health Administration: Implementing patient-centered medical homes in the nation’s largest integrated delivery system. Commonwealth Fund Website. http://www.commonwealthfund.org/publications/case-studies/2011/sep/va-medical-homes. Updated September 2011. Accessed February 27, 2015.

3. Simon JH, Li D, Traboulsee A, et al. Standardized MR imaging protocol for multiple sclerosis: Consortium of MS Centers consensus guidelines. AJNR Am J Neuroradiol. 2006;27(2):455-461.

4. Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292-302.

5. Kurtzke JF. Rating neurological impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-1452.

6. Wallin MT, Culpepper WJ, Coffman P, et al; Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain. 2012;135(pt 6):1780-1785.

7. Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in
multiple racial and ethnic groups. Neurology. 2013;80(19):1734-1739.

8. Cree BA, Khan O, Bourdette D, et al. Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis. Neurology. 2004;63(11):2039-2045.

9. U.S. Department of Veterans Affairs, Veterans Health Administration. Multiple Sclerosis System of Care Procedures. Washington, DC: Department of Veterans Affairs; 2009.

Author and Disclosure Information

Dr. Wallin is the clinical associate director for the MS Centers of Excellence—East, a neurologist at the Washington, DC VAMC, and associate professor of neurology at Georgetown University, all in Washington, DC. He is also associate professor of neurology at the University of Maryland School of Medicine in Baltimore. Dr. Campea is the medical director of Inpatient Rehabilitation at the VA Puget Sound Health Care System and an assistant professor in the Department of Rehabilitation Medicine at the University of Washington's School of Medicine, both in Seattle. Dr. Haselkorn is director of the MS Centers of Excellence—West and a physician at the VA Puget Sound Health Care System and professor in Rehabilitation Medicine and adjunct professor in Epidemiology at the University of Washington's School of Medicine.

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Author and Disclosure Information

Dr. Wallin is the clinical associate director for the MS Centers of Excellence—East, a neurologist at the Washington, DC VAMC, and associate professor of neurology at Georgetown University, all in Washington, DC. He is also associate professor of neurology at the University of Maryland School of Medicine in Baltimore. Dr. Campea is the medical director of Inpatient Rehabilitation at the VA Puget Sound Health Care System and an assistant professor in the Department of Rehabilitation Medicine at the University of Washington's School of Medicine, both in Seattle. Dr. Haselkorn is director of the MS Centers of Excellence—West and a physician at the VA Puget Sound Health Care System and professor in Rehabilitation Medicine and adjunct professor in Epidemiology at the University of Washington's School of Medicine.

Author and Disclosure Information

Dr. Wallin is the clinical associate director for the MS Centers of Excellence—East, a neurologist at the Washington, DC VAMC, and associate professor of neurology at Georgetown University, all in Washington, DC. He is also associate professor of neurology at the University of Maryland School of Medicine in Baltimore. Dr. Campea is the medical director of Inpatient Rehabilitation at the VA Puget Sound Health Care System and an assistant professor in the Department of Rehabilitation Medicine at the University of Washington's School of Medicine, both in Seattle. Dr. Haselkorn is director of the MS Centers of Excellence—West and a physician at the VA Puget Sound Health Care System and professor in Rehabilitation Medicine and adjunct professor in Epidemiology at the University of Washington's School of Medicine.

Multiple sclerosis (MS) is the most common progressive neurologic disease of young adults, affecting 350,000 to 400,000 people in the U.S.1 The disease most commonly presents with intermittent relapses and evolves to a progressive form. Common symptoms include weakness, sensory loss, vision disturbances, ataxia, bladder dysfunction, cognitive deficits, and fatigue. A thoughtful multidisciplinary approach is essential for patients with MS who live with an unpredictable disease, numerous secondary symptoms, and the fear of debilitating progression. The goal is to maintain good quality of life (QOL) for patients with MS.

This article responds to the issues presented by a young patient recently released from active-duty military service and illustrate the power of a team
approach to managing the care of patients with MS. The 3 sections are written from the perspectives of (1) neurologists and physiatrists; (2) nurse practitioners; and (3) psychologists and also represent contributions of each discipline toward the goal of maintaining QOL for patients with MS. Although these health care specialists are highlighted, many more were involved in the care of this patient and are not included due to space constraints.

Case Presentation

William is a 31-year-old African American man who began experiencing headaches, occasional imbalance, periods of confusion, and mental fogginess following discharge from active duty 5 years ago. William had been deployed to Afghanistan and was exposed to at least 1 improvised explosive device blast while there. He did not disclose to army physicians a 24-hour loss of vision in his right eye while driving a tactical vehicle in Kandahar, Afghanistan. The patient thought his vision changes were caused by stress and worried that he would be removed from patrol duties if he reported the problem. At the time of his discharge, William was diagnosed with mild traumatic brain injury from blast exposure.

After discharge, William sought care in the private sector but felt providers assumed all his symptoms were the result of depression or posttraumatic stress disorder. He began noticing problems at his new job: missing deadlines, forgetting conversations, and having difficulty making decisions. William’s gait became clumsy, and he occasionally tripped and ran into walls. He worried that his supervisor and colleagues would discover his problems, so he quit his job. William knew something was wrong and wanted a provider who would understand him. He decided to take advantage of the VA health care system and its promise of care for Operation Enduring Freedom/Operation Iraqi Freedom veterans. He had an initial evaluation with his primary care Patient Aligned Care Team (PACT), which noted deficits on his neurologic examination and referred him to the neurology clinic affiliated with the MS Centers of Excellence (MSCoE).2

William’s neurologic examination was significant for psychomotor slowing, memory loss, cerebellar ataxia, and lower extremity spasticity. Magnetic resonance imaging (MRI) of the brain and spinal cord were obtained as recommended by the Consortium of MS Centers guidelines.3 The MRI showed 12 high-frequency T2 lesions in the periventricular regions bilaterally and cerebellum. One lesion was gadolinium enhanced. Two additional high T2 lesions were noted in the upper cervical spinal cord. After ruling out mimics, William was diagnosed with relapsing remitting MS, based on McDonald Criteria.4 His Expanded Disability Status score was 3.0, and deficits were documented in the pyramidal, cerebellar, and cerebral functional systems.5 William’s history and symptoms, blood, and cerebrospinal fluid studies were consistent with the typical pattern of relapses and remissions with neurologic symptoms separated in space and time.

The neurologist gave William some context to the diagnosis. He noted the changing epidemiology of the disease and that African Americans are considered a highrisk group for rapid progression of MS symptoms.6-8 A progress note and MS Assessment Tool were completed in the Computerized Patient Record System (CPRS)—an annual requirement recommended by the Multiple Sclerosis System of Care Procedures.9

Symptom Management

All FDA-approved MS disease-modifying therapies (DMT) are available within the VA MSCoE network. After a discussion of risks and benefits with William, the neurologist recommended 2 options for therapy. One option was more aggressive and had the greatest efficacy in a randomized controlled trial, yet a higher risk for adverse events (AEs). The other option had modest efficacy and favorable long-term safety data. After further discussion with his neurologist, William indicated he wanted to avoid risks and preferred medication with a long track record for success and safety. He selected an injectable DMT.

William returned to the clinic 3 months later and reported no new or worsening neurologic symptoms and stated that he was “fine.” However, in a review of his MS symptoms, the neurologist discovered gait ataxia, bladder urgency, and constipation. On further questioning, William admitted to experiencing excessive fatigue, an inability to go to or stay asleep, and difficulty in finishing tasks. William also indicated that he had forgotten to take
his DMT as prescribed, had a fear of injecting himself, and had painful injection site reactions. The neurologist referred him for a bladder ultrasound and for urinalysis and urine cultures, as well as for more extensive cognitive testing with a neuropsychologist and for gait assessment with the physiatrist.

William reported 2 recent falls to the physiatrist, both occurring while walking on his lawn to get the mail, neither resulting in significant injury. He reported using walls and furniture to maintain balance at home. Although he continued to insist that he was fine, further questioning revealed that he at times avoided leaving home due to a fear of falling.

A focused physical examination consisting of an assessment of lower limb muscular strength, coordination, sensation, and spasticity helped identify issues that were causing his impaired gait. Additionally, the impact of changes in vision, cognition, and fatigue were explored, because they also contributed to falls and impacted use of mobility assistive devices.

William had normal strength except for mild weakness in his left ankle dorsiflexors, intact sensation, impaired heel-to-shin performance, and minimal resistance of his hip adductors. A wide base of support, short stride length, and a slow cadence characterized his gait. His average of two 25-foot walk tests was 15 seconds, and by the end of his second trial, he had mild foot drop.

Impairments in gait are typically multifactorial, so treatment plans often consider multiple issues. Because William was able to use a wide base of support to maintain his balance and quality of gait, it did not seem that spasticity was impairing his function. Therefore, an oral spasticity agent was not indicated, although a stretching program was started to prevent potential future complications related to spasticity.

An ankle-foot orthosis could address William’s foot drop. An assistive device, such as a cane or walker, could also help minimize falls associated with ataxia. It is important to screen patients for psychological impacts of loss of function and psychological barriers to the use of assistive devices; referral to a rehabilitation psychologist may be warranted. Last, William’s walking speed was slightly impaired. When speed of walking is a concern, patients might benefit from a trial of dalfampridine once walking safety has been optimized.

MS Care Models

Because MS is a dynamic disease, producing multifocal neurologic deficits and disability, a wide range of health care specialists are required to assist in MS care throughout the life of the patient. The neurologist is typically the principal caregiver, but referrals to rehabilitation specialists, psychologists, ophthalmologists, urologists, speech pathologists, wound specialists, and social workers are common. Multiple sclerosis advocacy groups within the U.S. frequently promote multidisciplinary care. Yet few attempts have been made to define multidisciplinary MS care models or to test their effectiveness. Like other chronic conditions, coordination and continuity of care for patients with MS are often suboptimal.

About 30,000 patients with MS use the VA health care system. Treatment takes place largely in outpatient clinics. Patients with MS require more visits per person than do all but a handful of other patient populations. Multiple sclerosis therapy includes complex and expensive pharmacologic agents as well as multidisciplinary medical and rehabilitation services and assistive technology. In 2003, after surveys showed wide and unexplained variations across the VA in the care of patients with MS, 2 MSCoE coordinating centers were established to improve access to MS specialty care, develop national standards of care, and implement those standards through a network of regional MS programs.

With input from the MSCoE and a network of more than 70 VA MS programs, the VA Central Office released a handbook for MS care in December 2009. The VA handbook Multiple Sclerosis System of Care Procedures is the first MS health care policy directive that has been created, outlining a comprehensive plan of care for patients with MS.9 The handbook describes the diagnostic and therapeutic health care services that are required by patients with MS, including primary care, MS specialty care, rehabilitation, palliative care, respite care, home care, long-term care, mental health care, social work services, telehealth services, and access to disease-modifying and symptomatic pharmacologic therapies.

According to the MS handbook, every patient with MS should receive an annual evaluation in which the care plan is reviewed with a provider who is knowledgeable about MS. The provider then completes the required MS Assessment Tool within the CPRS. The annual visit and MS Assessment Tool help to identify patients with MS, track medication AEs, and populate the VA national MS surveillance registry. Ideally, this evaluation takes place in
a face-to-face visit with a MS subspecialist. However, this requirement also could be satisfied by a visit with another provider knowledgeable about MS or through a video or telephone telehealth interview.

The location of care should be dictated by the needs of the patient and be as convenient as possible. To support this, a regional hub-and-spoke network has been outlined. Each VISN supports at least 1 MS regional program (hub site). The MS regional program team consists of a physician with MS expertise, a nurse, a social worker, and access to specialty care services. These teams lead and coordinate integrated MS care at the local medical center and assist in the care of patients with MS at remote facilities within the VISN.

Facilities without a MS regional program are designated as spoke sites that have a designated MS care coordinator to assist with care at that facility. Spoke sites work with the regional hub to deliver MS care to the local population. Consultations from the closest MS regional center may be provided by telephone, telehealth, or a live visit. The level of MS care for regional centers is influenced by the patient’s MS stage and the location. Different MS care models that incorporate more consultative and telehealth approaches may need to be developed for patients with MS in rural areas with limited access to specialists.

Click here to read the digital edition.

Multiple sclerosis (MS) is the most common progressive neurologic disease of young adults, affecting 350,000 to 400,000 people in the U.S.1 The disease most commonly presents with intermittent relapses and evolves to a progressive form. Common symptoms include weakness, sensory loss, vision disturbances, ataxia, bladder dysfunction, cognitive deficits, and fatigue. A thoughtful multidisciplinary approach is essential for patients with MS who live with an unpredictable disease, numerous secondary symptoms, and the fear of debilitating progression. The goal is to maintain good quality of life (QOL) for patients with MS.

This article responds to the issues presented by a young patient recently released from active-duty military service and illustrate the power of a team
approach to managing the care of patients with MS. The 3 sections are written from the perspectives of (1) neurologists and physiatrists; (2) nurse practitioners; and (3) psychologists and also represent contributions of each discipline toward the goal of maintaining QOL for patients with MS. Although these health care specialists are highlighted, many more were involved in the care of this patient and are not included due to space constraints.

Case Presentation

William is a 31-year-old African American man who began experiencing headaches, occasional imbalance, periods of confusion, and mental fogginess following discharge from active duty 5 years ago. William had been deployed to Afghanistan and was exposed to at least 1 improvised explosive device blast while there. He did not disclose to army physicians a 24-hour loss of vision in his right eye while driving a tactical vehicle in Kandahar, Afghanistan. The patient thought his vision changes were caused by stress and worried that he would be removed from patrol duties if he reported the problem. At the time of his discharge, William was diagnosed with mild traumatic brain injury from blast exposure.

After discharge, William sought care in the private sector but felt providers assumed all his symptoms were the result of depression or posttraumatic stress disorder. He began noticing problems at his new job: missing deadlines, forgetting conversations, and having difficulty making decisions. William’s gait became clumsy, and he occasionally tripped and ran into walls. He worried that his supervisor and colleagues would discover his problems, so he quit his job. William knew something was wrong and wanted a provider who would understand him. He decided to take advantage of the VA health care system and its promise of care for Operation Enduring Freedom/Operation Iraqi Freedom veterans. He had an initial evaluation with his primary care Patient Aligned Care Team (PACT), which noted deficits on his neurologic examination and referred him to the neurology clinic affiliated with the MS Centers of Excellence (MSCoE).2

William’s neurologic examination was significant for psychomotor slowing, memory loss, cerebellar ataxia, and lower extremity spasticity. Magnetic resonance imaging (MRI) of the brain and spinal cord were obtained as recommended by the Consortium of MS Centers guidelines.3 The MRI showed 12 high-frequency T2 lesions in the periventricular regions bilaterally and cerebellum. One lesion was gadolinium enhanced. Two additional high T2 lesions were noted in the upper cervical spinal cord. After ruling out mimics, William was diagnosed with relapsing remitting MS, based on McDonald Criteria.4 His Expanded Disability Status score was 3.0, and deficits were documented in the pyramidal, cerebellar, and cerebral functional systems.5 William’s history and symptoms, blood, and cerebrospinal fluid studies were consistent with the typical pattern of relapses and remissions with neurologic symptoms separated in space and time.

The neurologist gave William some context to the diagnosis. He noted the changing epidemiology of the disease and that African Americans are considered a highrisk group for rapid progression of MS symptoms.6-8 A progress note and MS Assessment Tool were completed in the Computerized Patient Record System (CPRS)—an annual requirement recommended by the Multiple Sclerosis System of Care Procedures.9

Symptom Management

All FDA-approved MS disease-modifying therapies (DMT) are available within the VA MSCoE network. After a discussion of risks and benefits with William, the neurologist recommended 2 options for therapy. One option was more aggressive and had the greatest efficacy in a randomized controlled trial, yet a higher risk for adverse events (AEs). The other option had modest efficacy and favorable long-term safety data. After further discussion with his neurologist, William indicated he wanted to avoid risks and preferred medication with a long track record for success and safety. He selected an injectable DMT.

William returned to the clinic 3 months later and reported no new or worsening neurologic symptoms and stated that he was “fine.” However, in a review of his MS symptoms, the neurologist discovered gait ataxia, bladder urgency, and constipation. On further questioning, William admitted to experiencing excessive fatigue, an inability to go to or stay asleep, and difficulty in finishing tasks. William also indicated that he had forgotten to take
his DMT as prescribed, had a fear of injecting himself, and had painful injection site reactions. The neurologist referred him for a bladder ultrasound and for urinalysis and urine cultures, as well as for more extensive cognitive testing with a neuropsychologist and for gait assessment with the physiatrist.

William reported 2 recent falls to the physiatrist, both occurring while walking on his lawn to get the mail, neither resulting in significant injury. He reported using walls and furniture to maintain balance at home. Although he continued to insist that he was fine, further questioning revealed that he at times avoided leaving home due to a fear of falling.

A focused physical examination consisting of an assessment of lower limb muscular strength, coordination, sensation, and spasticity helped identify issues that were causing his impaired gait. Additionally, the impact of changes in vision, cognition, and fatigue were explored, because they also contributed to falls and impacted use of mobility assistive devices.

William had normal strength except for mild weakness in his left ankle dorsiflexors, intact sensation, impaired heel-to-shin performance, and minimal resistance of his hip adductors. A wide base of support, short stride length, and a slow cadence characterized his gait. His average of two 25-foot walk tests was 15 seconds, and by the end of his second trial, he had mild foot drop.

Impairments in gait are typically multifactorial, so treatment plans often consider multiple issues. Because William was able to use a wide base of support to maintain his balance and quality of gait, it did not seem that spasticity was impairing his function. Therefore, an oral spasticity agent was not indicated, although a stretching program was started to prevent potential future complications related to spasticity.

An ankle-foot orthosis could address William’s foot drop. An assistive device, such as a cane or walker, could also help minimize falls associated with ataxia. It is important to screen patients for psychological impacts of loss of function and psychological barriers to the use of assistive devices; referral to a rehabilitation psychologist may be warranted. Last, William’s walking speed was slightly impaired. When speed of walking is a concern, patients might benefit from a trial of dalfampridine once walking safety has been optimized.

MS Care Models

Because MS is a dynamic disease, producing multifocal neurologic deficits and disability, a wide range of health care specialists are required to assist in MS care throughout the life of the patient. The neurologist is typically the principal caregiver, but referrals to rehabilitation specialists, psychologists, ophthalmologists, urologists, speech pathologists, wound specialists, and social workers are common. Multiple sclerosis advocacy groups within the U.S. frequently promote multidisciplinary care. Yet few attempts have been made to define multidisciplinary MS care models or to test their effectiveness. Like other chronic conditions, coordination and continuity of care for patients with MS are often suboptimal.

About 30,000 patients with MS use the VA health care system. Treatment takes place largely in outpatient clinics. Patients with MS require more visits per person than do all but a handful of other patient populations. Multiple sclerosis therapy includes complex and expensive pharmacologic agents as well as multidisciplinary medical and rehabilitation services and assistive technology. In 2003, after surveys showed wide and unexplained variations across the VA in the care of patients with MS, 2 MSCoE coordinating centers were established to improve access to MS specialty care, develop national standards of care, and implement those standards through a network of regional MS programs.

With input from the MSCoE and a network of more than 70 VA MS programs, the VA Central Office released a handbook for MS care in December 2009. The VA handbook Multiple Sclerosis System of Care Procedures is the first MS health care policy directive that has been created, outlining a comprehensive plan of care for patients with MS.9 The handbook describes the diagnostic and therapeutic health care services that are required by patients with MS, including primary care, MS specialty care, rehabilitation, palliative care, respite care, home care, long-term care, mental health care, social work services, telehealth services, and access to disease-modifying and symptomatic pharmacologic therapies.

According to the MS handbook, every patient with MS should receive an annual evaluation in which the care plan is reviewed with a provider who is knowledgeable about MS. The provider then completes the required MS Assessment Tool within the CPRS. The annual visit and MS Assessment Tool help to identify patients with MS, track medication AEs, and populate the VA national MS surveillance registry. Ideally, this evaluation takes place in
a face-to-face visit with a MS subspecialist. However, this requirement also could be satisfied by a visit with another provider knowledgeable about MS or through a video or telephone telehealth interview.

The location of care should be dictated by the needs of the patient and be as convenient as possible. To support this, a regional hub-and-spoke network has been outlined. Each VISN supports at least 1 MS regional program (hub site). The MS regional program team consists of a physician with MS expertise, a nurse, a social worker, and access to specialty care services. These teams lead and coordinate integrated MS care at the local medical center and assist in the care of patients with MS at remote facilities within the VISN.

Facilities without a MS regional program are designated as spoke sites that have a designated MS care coordinator to assist with care at that facility. Spoke sites work with the regional hub to deliver MS care to the local population. Consultations from the closest MS regional center may be provided by telephone, telehealth, or a live visit. The level of MS care for regional centers is influenced by the patient’s MS stage and the location. Different MS care models that incorporate more consultative and telehealth approaches may need to be developed for patients with MS in rural areas with limited access to specialists.

Click here to read the digital edition.

References

1. Anderson DW, Ellenberg JH, Leventhan CM, Reingold SC, Rodriguez M, Silberberg DH. Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol. 1992;31(3):333-336.

2. Klein S. The Veterans Health Administration: Implementing patient-centered medical homes in the nation’s largest integrated delivery system. Commonwealth Fund Website. http://www.commonwealthfund.org/publications/case-studies/2011/sep/va-medical-homes. Updated September 2011. Accessed February 27, 2015.

3. Simon JH, Li D, Traboulsee A, et al. Standardized MR imaging protocol for multiple sclerosis: Consortium of MS Centers consensus guidelines. AJNR Am J Neuroradiol. 2006;27(2):455-461.

4. Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292-302.

5. Kurtzke JF. Rating neurological impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-1452.

6. Wallin MT, Culpepper WJ, Coffman P, et al; Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain. 2012;135(pt 6):1780-1785.

7. Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in
multiple racial and ethnic groups. Neurology. 2013;80(19):1734-1739.

8. Cree BA, Khan O, Bourdette D, et al. Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis. Neurology. 2004;63(11):2039-2045.

9. U.S. Department of Veterans Affairs, Veterans Health Administration. Multiple Sclerosis System of Care Procedures. Washington, DC: Department of Veterans Affairs; 2009.

References

1. Anderson DW, Ellenberg JH, Leventhan CM, Reingold SC, Rodriguez M, Silberberg DH. Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol. 1992;31(3):333-336.

2. Klein S. The Veterans Health Administration: Implementing patient-centered medical homes in the nation’s largest integrated delivery system. Commonwealth Fund Website. http://www.commonwealthfund.org/publications/case-studies/2011/sep/va-medical-homes. Updated September 2011. Accessed February 27, 2015.

3. Simon JH, Li D, Traboulsee A, et al. Standardized MR imaging protocol for multiple sclerosis: Consortium of MS Centers consensus guidelines. AJNR Am J Neuroradiol. 2006;27(2):455-461.

4. Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292-302.

5. Kurtzke JF. Rating neurological impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-1452.

6. Wallin MT, Culpepper WJ, Coffman P, et al; Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain. 2012;135(pt 6):1780-1785.

7. Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in
multiple racial and ethnic groups. Neurology. 2013;80(19):1734-1739.

8. Cree BA, Khan O, Bourdette D, et al. Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis. Neurology. 2004;63(11):2039-2045.

9. U.S. Department of Veterans Affairs, Veterans Health Administration. Multiple Sclerosis System of Care Procedures. Washington, DC: Department of Veterans Affairs; 2009.

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