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.