Appraisals of Pain in Pediatric Inflammatory Bowel Disease: A Qualitative Study With Youth, Parents, and Providers

BACKGROUND: Pain is a predominant symptom of inflammatory bowel disease (IBD), and is influenced by cognitive, emotional, and behavioral factors. The cognitive-affective model of symptom appraisal (CAMSA) has been used to understand how youth view symptoms in chronic conditions. We sought to (1) determine how youth with IBD and their parents appraise pain, and how their perspectives fit within CAMSA, and (2) explore health care providers’ understanding and communication about pain. METHODS: Participants included 19 youth ages 10–17 years with chronic IBD pain and their parents, and 5 IBD providers from a gastroenterology clinic. Separate semi-structured qualitative interviews with youth, parents, and providers were conducted. Interview prompts were adapted from CAMSA, previous studies of pediatric pain and symptom monitoring, and a qualitative study in adults with IBD pain. Interviews were analyzed according to principles of reflexive thematic analysis. RESULTS: Three key components of CAMSA (IBD Threat, Fear/Worry, and Biased Attending) were identified in youth and parent dyads. Some youth showed Biased Attending, including difficulty disengaging, while other youth simply monitored pain. The overarching theme for provider interviews was Gastroenterologists view pain as a secondary (rather than primary) treatment issue. CONCLUSIONS: CAMSA is potentially applicable to pain appraisal in youth with IBD and their parents. When health care providers communicate about pain, they should consider how symptom uncertainty may be influenced by threat, fear/worry, and biased attending. Further studies are needed to develop and test psychosocial interventions to reduce fear and threat of pain in youth with IBD in partnership with families and providers.