Pain and quality of life in youth with inflammatory bowel disease: The role of parent and youth perspectives on family functioning

Introduction: Daily pain experiences are a common feature of pediatric inflammatory bowel disease (IBD), which can negatively influence their health-related quality of life (HRQOL). A holistic, family systems approach is needed to further our understanding of daily pain experiences in youth with IBD and their influence on youth’s HRQOL. Objectives: The study’s objectives were to 1) provide a detailed description of daily pain experiences in youth with IBD, 2) investigate the relative contribution of family functioning and pain in explaining youth’s HRQOL, and 3) explore differences in parental and youth perspectives. Methods: Sixty youth with IBD (8-17years) and a parent completed questionnaires to assess family functioning, HRQOL and pain experiences within the past week. A subsample of 16 youth completed an online diary (7 days) about their pain experiences. Results: When including any pain experiences, higher youth-reported family satisfaction and lower pain intensity were related to better HRQOL, while higher parent-reported family cohesion and satisfaction indirectly related to youth HRQOL via lower pain intensity. When only accounting for abdominal pain, pain intensity related negatively with HRQOL, and only parent-reported cohesion showed an indirect relation with HRQOL via pain intensity. Diary data revealed large heterogeneity: abdominal pain, described as cramping, sharp, and/or stinging was most frequent, but other pain symptoms (e.g. back pain, headache) often co-occured. Conclusion: The findings provide a rich picture of the daily pain experiences of youth with IBD and underscore the importance of a family systems approach to understand how family functioning and pain symptoms influence HRQOL