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

Müller, Rebekka; Ziade, Farah; Pittet, Valérie; Fournier, Nicolas; Ezri, Jessica; Schoepfer, Alain; Schibli, Susanne; Spalinger, Johannes; Braegger, Christian; Nydegger, Andreas; Juillerat, Pascal; Tutuian, Radu; Wiest, Reiner; Müller, Christoph; Swiss IBD Cohort Study Group, . (2016). Quality of Life in Swiss Paediatric Inflammatory Bowel Disease Patients: Do Patients and Their Parents Experience Disease in the Same Way? Journal of Crohn's & Colitis, 10(3), pp. 269-276. Elsevier 10.1093/ecco-jcc/jjv199

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Service Sector > Institute of Pathology > Immunopathology
04 Faculty of Medicine > Department of Gastro-intestinal, Liver and Lung Disorders (DMLL) > Clinic of Visceral Surgery and Medicine > Gastroenterology
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR) > DBMR Forschung Mu35 > Forschungsgruppe Gastroenterologie / Mukosale Immunologie
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR) > DBMR Forschung Mu35 > Forschungsgruppe Gastroenterologie / Mukosale Immunologie

04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine

UniBE Contributor:

Müller, Rebekka; Schibli, Susanne; Spalinger, Johannes; Juillerat, Pascal; Tutuian, Radu; Wiest, Reiner and Müller, Christoph

Subjects:

600 Technology > 610 Medicine & health

ISSN:

1873-9946

Publisher:

Elsevier

Language:

English

Submitter:

André Schaller

Date Deposited:

02 May 2016 11:05

Last Modified:

26 Jan 2017 15:17

Publisher DOI:

10.1093/ecco-jcc/jjv199

PubMed ID:

26519462

Uncontrolled Keywords:

Inflammatory bowel disease; paediatric; quality of life

BORIS DOI:

10.7892/boris.79328

URI:

https://boris.unibe.ch/id/eprint/79328

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