Quality of life and coping in children and adolescents with inflammatory bowel disease

Inflammatory Bowel Disease (IBD) is a chronic disease with pehods of remission and relapse, as inflammation occurs in the gastrointestinal tract causing symptoms such as diarrhoea, fatigue, abdominal cramps and loss of appetite. This work aimed to validate an instrument to measure quality of life (aoL) in children with IBD and explore family functioning and coping strategies used by children and their parents. A pilot study was conducted to assess the feasibility of adapting the Dutch children's IBD QoL instrument (IMPACT) for the UK population. The response scale was changed from a visual analogue scale to a Liked scale and some wording was modified to make the scale child fhendly. One hundred children took part in a validation study of both paper and computer versions of IMPACT UK. Face validity was good and most patients found the instrument was easy to understand, cleady laid out, not too personal and would complete the questionnaire again. Principal components analysis indicated that a five factor solution was the most clinically relevant and statistically meaningful. The domains were IBD symptoms, Energy, Embarrassment, Worries and concerns about IBD and Body Image, and all had good internal reliability. No difference was found between paper and computer versions of IMPACT. Compahng patients with different levels of disease activity indicated good discriminant ability for the Embarrassment, IBD symptoms and Energy scales. Concurrent validity was confirmed by demonstrating significant correlation between comparable domains in the Child Health Questionnaire and IMPACT. Test retest analysis suggested fair external reliability. Children with IBD scored highest (best QoL) on the Embarrassment domain and lowest on Body image. No differences were found in QoL between gender, disease group and age group. Ninety children with IBD and 87 of their parents/guardians completed coping questionnaires. The most popular coping strategies used by children were cognitive restructuring, wishful thinking and distraction and ...