Quality of life in children with Crohn's disease: A pilot study

Background: Focus group meetings were held with two groups, each containing 12 children with Crohn's disease aged 8 to 12 and 12 to 17 years. The chil dren were asked broad questions about how Crohn's disease and its treatment affected their lives. To explore these areas in more detail, an 88-item qu estionnaire was developed and read to an additional 16 of 20 children with Crohn's disease selected at random from outpatients. At first, many of the children denied that Crohn's disease affected their lives at all, but it so on became apparent that many were frustrated or angry about physical sympto ms, lack of understanding about Crohn's disease, unpleasant investigations, treatment, and hospitalisation. Methods: The questionnaire covered six domains of health-related quality of life including symptoms and treatment, social, emotional, family, educatio nal, and future aspects. Results: Elemental diet was the preferred treatment, although surgery was m ore effective in controlling symptoms. Children receiving steroids had more depressive symptoms. Absenteeism from school and inability to engage in sc hool sports, swimming, and running were frequent problems. There were also difficulties with taking holidays and staying at friends' houses. Worry was reported in 14 of 16 children, anger and frustration and feeling fed up in 12 of 16. Conclusions: In addition to being a symptomatically disabling condition, Cr ohn's disease has a great impact on the health-related quality of life of a ffected children. Future studies of treatment in children with inflammatory bowel disease should include an attempt to assess the impact on the child' s health-related quality of life.