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Article

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

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Caes L, Chambers C, Otley A & Stinson J (2019) Pain and quality of life in youth with inflammatory bowel disease: The role of parent and youth perspectives on family functioning. PAIN Reports, 4 (2), Art. No.: e715. https://doi.org/10.1097/PR9.0000000000000715

Abstract
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.

Keywords
Inflammatory bowel disease; health-related quality of life; pain; family functioning; multiple perspectives; family satisfaction; family cohesion;

Journal
PAIN Reports: Volume 4, Issue 2

StatusPublished
FundersLouise and Alan Edwards Foundation
Publication date31/03/2019
Publication date online01/03/2019
Date accepted by journal29/12/2018
URL
eISSN2471-2531

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Dr Line Caes

Dr Line Caes

Associate Professor, Psychology

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