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Chronic pain in pediatric inflammatory bowel disease (IBD) is not associated with disease activity but has a significant impact on quality of life, including emotional well-being and social functioning, shows a study on chronic pain in children with IBD.

“A major finding of our small study was the impact of chronic pain on well-being and emotional health which was particularly significant in vulnerable children moving through adolescence towards adulthood,” said Dhamyanthi Thangarajah, MD, a consultant pediatric gastroenterologist at Chelsea and Westminster Hospital, London, in a presentation at the annual congress of the European Crohn’s and Colitis Organisation.

In the study of 41 children between 10 and 17 years old, chronic pain was found in 80% of participants who had established and extensive disease. Most participants had markers for fecal calprotectin, a sensitive marker for inflammation in the gastrointestinal tract, and others had Crohn’s disease and were prescribed biologics.

No relationship was found between chronic pain and IBD activity, but quality of life scores were negatively impacted in children with chronic pain.

“Moving forward, strategies should target screening for chronic pain in children with IBD and provide psychosocial interventions early on,” Dr. Thangarajah said. “We also need to understand more about internalizing pain and explore mood disorders.”

Many children with IBD also present with chronic abdominal pain, which was the impetus for conducting the study. “Essentially, we wondered whether this was a symptom of active disease, or were we missing something? In adult patients, chronic pain is prevalent, but in children we don’t necessarily screen for chronic pain, although it is part of active disease,” she said.

There is considerable patient and parental anxiety around the nature and origins of the chronic pain, Dr. Thangarajah said.

“We need to understand the prevalence and impact of chronic pain in children and adolescents, and as such we wanted to understand and characterize our cohort,” she said.

Dr. Thangarajah said clinicians tend to be very focused on disease activity and that screening for chronic pain is not usually carried out. “When we look at their clinical indices, the patients seem better, but the fact that it affects emotional health, and we don’t screen for it, means we need psychological help for these pediatric patients,” she said. “Patients need to be able to talk about their pain, and we need to understand if these children are having IBD-type symptoms, and this just isn’t asked about. It would be good to extend this study with a psychologist to understand more about this pain.”
 

How the study was conducted

The findings are based on the IMPACT III quality of life questionnaire for IBD. Chronic pain was defined as mild, moderate, or severe according to the van Korff scale.

“Patients had extensive and established disease, as expected in a pediatric cohort, the majority of whom were on immunosuppressant biologic drugs [64%-89%]. Among these patients, analgesic use was low, which is part of the education we give parents, and there was no opiate use in children, which differs from adults with IBD,” Dr. Thangarajah said.

A total of 33/41 (80%) of patients had chronic pain, and of these, abdominal chronic pain was most common in 30/33 (90%), joint pain was present in 2/33 (6%), and headache in 1/33, (3%). The majority 26/33 (79%) were on biologic agents, and analgesia use was low at 15/33 (45%). A total of 42% of children across the spectrum of chronic pain severity were on immunomodulators. Comorbidities were present in 42%-57% of patients with mild, and moderate-severe chronic pain respectively.

 

 

IBD disease activity in children with chronic pain was compared with those without chronic pain, as defined by Pediatric Crohn’s Disease Activity Index (PCDAI), Pediatric Ulcerative Colitis Activity Index (PUCAI), C-reactive protein (CRP), and faecal calprotectin. No difference was found.

Dr. Thangarajah highlighted the significantly lower quality of life score in children with chronic pain (69 and 51 in mild, and moderate-severe pain subgroups respectively, compared with 81 in those children without chronic pain, P < .05). Specifically, body image showed no difference between children with and without chronic pain (59-65 points across no pain, mild, moderate and severe chronic pain).

Chronic pain patients also commonly reported sleep disturbance with around 66% of patients with chronic pain, compared with around 11% in those without. Anemia was reported in 30% versus 21% respectively. However, nearly half of children with chronic pain had comorbidities 16/33 (48%), and 5/16 (31%) had diagnoses that may be associated with comorbid pain.
 

Psychosocial support within gastroenterology unavailable

Christine Norton, PhD, professor of nursing at Kings College London, also spoke at the conference on abdominal pain and the well-being of patients with IBD. She said that pain can still be a problem for some patients in remission from IBD.

“In adults we find pain is related to disease activity, however, 40%-50% of patients with IBD remission still report pain. Abdominal pain is dominant but it can be anywhere in the body. This is really poorly addressed in clinical consultations. It’s a ‘don’t ask, don’t tell’ situation where the nurse or doctor would do something if they could, but they just don’t ask the patients,” she said.

If patients volunteer the information that they still have pain during remission, it might get dismissed as irritable bowel syndrome (IBS), Dr. Norton said. “Some patients do fulfill these criteria for IBS, but it still needs to be managed. Here at ECCO, the focus is on getting patients into deep remission and inflammation under tight control, but what do we do with the jangling pain nerves although there’s nothing apparently triggering them, the gut-brain sensitivity – it’s so hard to live with it. They need support,” she said.

Dr. Norton said clinicians need a better way to validate chronic pain. “Sometimes people don’t feel believed, but even if the doctor believes them, they don’t know what to do anyway. There’s very few places with psychological support within the field of gastroenterology. Do we educate the gastroenterologist in this aspect? Do we develop the skills of IBD nurses?”

Dr. Thangarajah and Dr. Norton have no disclosures to declare.

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Chronic pain in pediatric inflammatory bowel disease (IBD) is not associated with disease activity but has a significant impact on quality of life, including emotional well-being and social functioning, shows a study on chronic pain in children with IBD.

“A major finding of our small study was the impact of chronic pain on well-being and emotional health which was particularly significant in vulnerable children moving through adolescence towards adulthood,” said Dhamyanthi Thangarajah, MD, a consultant pediatric gastroenterologist at Chelsea and Westminster Hospital, London, in a presentation at the annual congress of the European Crohn’s and Colitis Organisation.

In the study of 41 children between 10 and 17 years old, chronic pain was found in 80% of participants who had established and extensive disease. Most participants had markers for fecal calprotectin, a sensitive marker for inflammation in the gastrointestinal tract, and others had Crohn’s disease and were prescribed biologics.

No relationship was found between chronic pain and IBD activity, but quality of life scores were negatively impacted in children with chronic pain.

“Moving forward, strategies should target screening for chronic pain in children with IBD and provide psychosocial interventions early on,” Dr. Thangarajah said. “We also need to understand more about internalizing pain and explore mood disorders.”

Many children with IBD also present with chronic abdominal pain, which was the impetus for conducting the study. “Essentially, we wondered whether this was a symptom of active disease, or were we missing something? In adult patients, chronic pain is prevalent, but in children we don’t necessarily screen for chronic pain, although it is part of active disease,” she said.

There is considerable patient and parental anxiety around the nature and origins of the chronic pain, Dr. Thangarajah said.

“We need to understand the prevalence and impact of chronic pain in children and adolescents, and as such we wanted to understand and characterize our cohort,” she said.

Dr. Thangarajah said clinicians tend to be very focused on disease activity and that screening for chronic pain is not usually carried out. “When we look at their clinical indices, the patients seem better, but the fact that it affects emotional health, and we don’t screen for it, means we need psychological help for these pediatric patients,” she said. “Patients need to be able to talk about their pain, and we need to understand if these children are having IBD-type symptoms, and this just isn’t asked about. It would be good to extend this study with a psychologist to understand more about this pain.”
 

How the study was conducted

The findings are based on the IMPACT III quality of life questionnaire for IBD. Chronic pain was defined as mild, moderate, or severe according to the van Korff scale.

“Patients had extensive and established disease, as expected in a pediatric cohort, the majority of whom were on immunosuppressant biologic drugs [64%-89%]. Among these patients, analgesic use was low, which is part of the education we give parents, and there was no opiate use in children, which differs from adults with IBD,” Dr. Thangarajah said.

A total of 33/41 (80%) of patients had chronic pain, and of these, abdominal chronic pain was most common in 30/33 (90%), joint pain was present in 2/33 (6%), and headache in 1/33, (3%). The majority 26/33 (79%) were on biologic agents, and analgesia use was low at 15/33 (45%). A total of 42% of children across the spectrum of chronic pain severity were on immunomodulators. Comorbidities were present in 42%-57% of patients with mild, and moderate-severe chronic pain respectively.

 

 

IBD disease activity in children with chronic pain was compared with those without chronic pain, as defined by Pediatric Crohn’s Disease Activity Index (PCDAI), Pediatric Ulcerative Colitis Activity Index (PUCAI), C-reactive protein (CRP), and faecal calprotectin. No difference was found.

Dr. Thangarajah highlighted the significantly lower quality of life score in children with chronic pain (69 and 51 in mild, and moderate-severe pain subgroups respectively, compared with 81 in those children without chronic pain, P < .05). Specifically, body image showed no difference between children with and without chronic pain (59-65 points across no pain, mild, moderate and severe chronic pain).

Chronic pain patients also commonly reported sleep disturbance with around 66% of patients with chronic pain, compared with around 11% in those without. Anemia was reported in 30% versus 21% respectively. However, nearly half of children with chronic pain had comorbidities 16/33 (48%), and 5/16 (31%) had diagnoses that may be associated with comorbid pain.
 

Psychosocial support within gastroenterology unavailable

Christine Norton, PhD, professor of nursing at Kings College London, also spoke at the conference on abdominal pain and the well-being of patients with IBD. She said that pain can still be a problem for some patients in remission from IBD.

“In adults we find pain is related to disease activity, however, 40%-50% of patients with IBD remission still report pain. Abdominal pain is dominant but it can be anywhere in the body. This is really poorly addressed in clinical consultations. It’s a ‘don’t ask, don’t tell’ situation where the nurse or doctor would do something if they could, but they just don’t ask the patients,” she said.

If patients volunteer the information that they still have pain during remission, it might get dismissed as irritable bowel syndrome (IBS), Dr. Norton said. “Some patients do fulfill these criteria for IBS, but it still needs to be managed. Here at ECCO, the focus is on getting patients into deep remission and inflammation under tight control, but what do we do with the jangling pain nerves although there’s nothing apparently triggering them, the gut-brain sensitivity – it’s so hard to live with it. They need support,” she said.

Dr. Norton said clinicians need a better way to validate chronic pain. “Sometimes people don’t feel believed, but even if the doctor believes them, they don’t know what to do anyway. There’s very few places with psychological support within the field of gastroenterology. Do we educate the gastroenterologist in this aspect? Do we develop the skills of IBD nurses?”

Dr. Thangarajah and Dr. Norton have no disclosures to declare.

Chronic pain in pediatric inflammatory bowel disease (IBD) is not associated with disease activity but has a significant impact on quality of life, including emotional well-being and social functioning, shows a study on chronic pain in children with IBD.

“A major finding of our small study was the impact of chronic pain on well-being and emotional health which was particularly significant in vulnerable children moving through adolescence towards adulthood,” said Dhamyanthi Thangarajah, MD, a consultant pediatric gastroenterologist at Chelsea and Westminster Hospital, London, in a presentation at the annual congress of the European Crohn’s and Colitis Organisation.

In the study of 41 children between 10 and 17 years old, chronic pain was found in 80% of participants who had established and extensive disease. Most participants had markers for fecal calprotectin, a sensitive marker for inflammation in the gastrointestinal tract, and others had Crohn’s disease and were prescribed biologics.

No relationship was found between chronic pain and IBD activity, but quality of life scores were negatively impacted in children with chronic pain.

“Moving forward, strategies should target screening for chronic pain in children with IBD and provide psychosocial interventions early on,” Dr. Thangarajah said. “We also need to understand more about internalizing pain and explore mood disorders.”

Many children with IBD also present with chronic abdominal pain, which was the impetus for conducting the study. “Essentially, we wondered whether this was a symptom of active disease, or were we missing something? In adult patients, chronic pain is prevalent, but in children we don’t necessarily screen for chronic pain, although it is part of active disease,” she said.

There is considerable patient and parental anxiety around the nature and origins of the chronic pain, Dr. Thangarajah said.

“We need to understand the prevalence and impact of chronic pain in children and adolescents, and as such we wanted to understand and characterize our cohort,” she said.

Dr. Thangarajah said clinicians tend to be very focused on disease activity and that screening for chronic pain is not usually carried out. “When we look at their clinical indices, the patients seem better, but the fact that it affects emotional health, and we don’t screen for it, means we need psychological help for these pediatric patients,” she said. “Patients need to be able to talk about their pain, and we need to understand if these children are having IBD-type symptoms, and this just isn’t asked about. It would be good to extend this study with a psychologist to understand more about this pain.”
 

How the study was conducted

The findings are based on the IMPACT III quality of life questionnaire for IBD. Chronic pain was defined as mild, moderate, or severe according to the van Korff scale.

“Patients had extensive and established disease, as expected in a pediatric cohort, the majority of whom were on immunosuppressant biologic drugs [64%-89%]. Among these patients, analgesic use was low, which is part of the education we give parents, and there was no opiate use in children, which differs from adults with IBD,” Dr. Thangarajah said.

A total of 33/41 (80%) of patients had chronic pain, and of these, abdominal chronic pain was most common in 30/33 (90%), joint pain was present in 2/33 (6%), and headache in 1/33, (3%). The majority 26/33 (79%) were on biologic agents, and analgesia use was low at 15/33 (45%). A total of 42% of children across the spectrum of chronic pain severity were on immunomodulators. Comorbidities were present in 42%-57% of patients with mild, and moderate-severe chronic pain respectively.

 

 

IBD disease activity in children with chronic pain was compared with those without chronic pain, as defined by Pediatric Crohn’s Disease Activity Index (PCDAI), Pediatric Ulcerative Colitis Activity Index (PUCAI), C-reactive protein (CRP), and faecal calprotectin. No difference was found.

Dr. Thangarajah highlighted the significantly lower quality of life score in children with chronic pain (69 and 51 in mild, and moderate-severe pain subgroups respectively, compared with 81 in those children without chronic pain, P < .05). Specifically, body image showed no difference between children with and without chronic pain (59-65 points across no pain, mild, moderate and severe chronic pain).

Chronic pain patients also commonly reported sleep disturbance with around 66% of patients with chronic pain, compared with around 11% in those without. Anemia was reported in 30% versus 21% respectively. However, nearly half of children with chronic pain had comorbidities 16/33 (48%), and 5/16 (31%) had diagnoses that may be associated with comorbid pain.
 

Psychosocial support within gastroenterology unavailable

Christine Norton, PhD, professor of nursing at Kings College London, also spoke at the conference on abdominal pain and the well-being of patients with IBD. She said that pain can still be a problem for some patients in remission from IBD.

“In adults we find pain is related to disease activity, however, 40%-50% of patients with IBD remission still report pain. Abdominal pain is dominant but it can be anywhere in the body. This is really poorly addressed in clinical consultations. It’s a ‘don’t ask, don’t tell’ situation where the nurse or doctor would do something if they could, but they just don’t ask the patients,” she said.

If patients volunteer the information that they still have pain during remission, it might get dismissed as irritable bowel syndrome (IBS), Dr. Norton said. “Some patients do fulfill these criteria for IBS, but it still needs to be managed. Here at ECCO, the focus is on getting patients into deep remission and inflammation under tight control, but what do we do with the jangling pain nerves although there’s nothing apparently triggering them, the gut-brain sensitivity – it’s so hard to live with it. They need support,” she said.

Dr. Norton said clinicians need a better way to validate chronic pain. “Sometimes people don’t feel believed, but even if the doctor believes them, they don’t know what to do anyway. There’s very few places with psychological support within the field of gastroenterology. Do we educate the gastroenterologist in this aspect? Do we develop the skills of IBD nurses?”

Dr. Thangarajah and Dr. Norton have no disclosures to declare.

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