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. 2016 Mar;10(3):269-76.
doi: 10.1093/ecco-jcc/jjv199. Epub 2015 Oct 29.

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

Rebekka Mueller  1 , Farah Ziade  1 , Valérie Pittet  2 , Nicolas Fournier  2 , Jessica Ezri  1 , Alain Schoepfer  3 , Susanne Schibli  4 , Johannes Spalinger  5 , Christian Braegger  6 , Andreas Nydegger  7 ; Swiss IBD Cohort Study
Collaborators, Affiliations

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

Rebekka Mueller et al. J Crohns Colitis. 2016 Mar.

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.

Keywords: Inflammatory bowel disease; paediatric; quality of life.

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Figures

Figure 1.
Figure 1.
Difference in evaluation of patients QoL between parents and patients.
Figure 2.
Figure 2.
Impact of the parents’ situation (alone, married or cohabiting) on difference in QoL estimation between parents and patients.
See this image and copyright information in PMC

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Supplementary concepts