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Appears in Collections:Psychology Journal Articles
Peer Review Status: Refereed
Title: Pain and quality of life in youth with inflammatory bowel disease: The role of parent and youth perspectives on family functioning
Author(s): Caes, Line
Chambers, Christine
Otley, Anthony
Stinson, Jennifer
Keywords: Inflammatory bowel disease
health-related quality of life
family functioning
multiple perspectives
family satisfaction
family cohesion
Issue Date: Mar-2019
Date Deposited: 22-Jan-2019
Citation: 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.
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.
DOI Link: 10.1097/PR9.0000000000000715
Rights: Copyright © 2019 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of The International Association for the Study of Pain. This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
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