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

Abstract

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 the least popular were blaming others and self criticism. Resignation and self criticism were more frequently used by older children (13-17 years). Younger males (8-12) used distraction more often than females the same age, yet 13-17 year old females used distraction more than males. Most children reported that cognitive restructuring and distraction helped with a flare up of disease activity. Parents were most likely to use problem solving and social support coping strategies, and least likely to accept responsibility and use confrontive coping strategies. Female parents used confrontive coping and social support strategies more often than male parents. The Family Assessment Device (FAD) showed IBD families were most 'effective' in behaviour control, affective responsibility and problem solving and children thought the family were worse at communication and affective responsiveness than their parents. The IBD families scored similarly on the FAD to healthy families.
Semi structured interviews were conducted with one patient with IBD and his mother and the Narrative inquiry technique (NI) was employed to present information in the form of two stories. The stories showed the effect of IBD on the patient and mother within their social setting and highlighted the possibility of leading a 'normal' life with IBD. The coping processes and QoL of the individuals were explored and it was possible to detect the different factors that conthbute to a person's QoL or choice of coping behaviour.
This work contdbutes significantly to the knowledge on the psychosocial effects of children with IBD and their families by using complementary methodologies and adopting a patient centred approach to research.