Rebekka Mueller1, Farah Ziade1, Valérie Pittet2, Nicolas Fournier2, Jessica Ezri1, Alain Schoepfer3, Susanne Schibli4, Johannes Spalinger5, Christian Braegger6, Andreas Nydegger7. 1. Division of Pediatric Gastroenterology, University Hospital of Lausanne, Lausanne, Switzerland. 2. Institute of Social and Preventive Medicine, University Hospital of Lausanne and University of Lausanne, Lausanne, Switzerland. 3. Division of Gastroenterology and Hepatology, University Hospital of Lausanne, Lausanne, Switzerland. 4. Division of Gastroenterology, University Children's Hospital of Bern, Bern, Switzerland. 5. Division of Gastroenterology, University Children's Hospital of Bern, Bern, Switzerland Division of Gastroenterology, Children's Hospital of Lucerne, Lucerne, Switzerland. 6. Division of Gastroenterology and Nutrition, University Children's Hospital of Zurich, Zurich, Switzerland. 7. Division of Pediatric Gastroenterology, University Hospital of Lausanne, Lausanne, Switzerland andreas.nydegger@chuv.ch.
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.
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.
Authors: Vered Schildkraut; George Alex; Donald J S Cameron; Winita Hardikar; Barry Lipschitz; Mark R Oliver; Dianne M Simpson; Anthony G Catto-Smith Journal: Inflamm Bowel Dis Date: 2013-01 Impact factor: 5.325
Authors: Luis Rajmil; Amanda Rodríguez López; Sílvia López-Aguilà; Jordi Alonso Journal: Health Qual Life Outcomes Date: 2013-06-20 Impact factor: 3.186
Authors: Chaowapong Jarasvaraparn; Kimberly Zlomke; Noelle C Vann; Bin Wang; Karen D Crissinger; David A Gremse Journal: Ann Gastroenterol Dig Disord Date: 2018-12-31