Quality of Life in Swiss Paediatric Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease in the Same Way?

Details

Serval ID
serval:BIB_3DA6ADEBDF1E
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Quality of Life in Swiss Paediatric Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease in the Same Way?
Journal
Journal of Crohn's and Colitis
Author(s)
Mueller R., Ziade F., Pittet V., Fournier N., Ezri J., Schoepfer A., Schibli S., Spalinger J., Braegger C., Nydegger A.
Working group(s)
Swiss IBD Cohort Study
ISSN
1876-4479 (Electronic)
ISSN-L
1873-9946
Publication state
Published
Issued date
2016
Peer-reviewed
Oui
Volume
10
Number
3
Pages
269-276
Language
english
Notes
Publication types: Journal Article
Publication Status: ppublish
Abstract
BACKGROUND AND AIMS: Inflammatory bowel diseases (IBDs) may impair quality of life (QoL) in paediatric patients. We aimed to evaluate in a nationwide cohort whether patients experience QoL in a different way when compared with their parents.
METHODS: Sociodemographic and psychosocial characteristics were prospectively acquired from paediatric patients and their parents included in the Swiss IBD Cohort Study. Disease activity was evaluated by the Paediatric Crohn's Disease Activity Index (PCDAI) and the Paediatric Ulcerative Colitis Activity Index (PUCAI). We assessed QoL using the KIDSCREEN questionnaire. The QoL domains were analysed and compared between children and parents according to type of disease, parents' age, origin, education and marital status.
RESULTS: We included 110 children and parents (59 Crohn's disease [CD], 45 ulcerative colitis [UC], 6 IBD unclassified [IBDU]). There was no significant difference in QoL between CD and UC/IBDU, whether the disease was active or in remission. Parents perceived overall QoL, as well as 'mood', 'family' and 'friends' domains, lower than the children themselves, independently of their place of birth and education. However, better concordance was found on 'school performance' and 'physical activity' domains. Marital status and age of parents significantly influenced the evaluation of QoL. Mothers and fathers being married or cohabiting perceived significantly lower mood, family and friends domains than their children, whereas mothers living alone had a lower perception of the friends domain; fathers living alone had a lower perception of family and mood subscores.
CONCLUSION: Parents of Swiss paediatric IBD patients significantly underestimate overall QoL and domains of QoL of their children independently of origin and education.
Pubmed
Web of science
Open Access
Yes
Create date
05/11/2015 9:00
Last modification date
20/08/2019 14:34
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