QUALITY-OF-LIFE IN CHILDREN WITH CROHNS-DISEASE

In a 10-week randomised cross-sectional study we used an 88-item quest ionnaire to assess the quality of life in 16 children (ages 8-17 years ) with Crohn's disease and their families. The questionnaire covered s ix domains of health-related quality of life, including disease and it s treatment, social, emotional, family, education, and future aspects. Crohn's disease affected education, with absenteeism in 12 and distra ction during school work in six. Three children had had a home tutor, and five stated their need for one. Engaging in sports was a problem f or eight children, mainly because of a lack of energy in five and the presence of a stoma in three children. Three children had missed every PE lesson in 1 year. Five children cited the social problem of being unable to stay over at friends' houses. Bullying concerned parents mor e than the children. Holiday difficulties included long distance trave ling or lack of toilet facilities during school trips. Elemental diet was the preferred treatment, although the majority complained about th e taste. Surgery was the most effective method of symptom control, tho ugh the resulting stoma was upsetting and restricted sports activities . Children on steroids had more depressive symptoms, Using the Rutter A Questionnaire, five children were designated ''neurotic.'' Parents' views of the severity of symptoms significantly correlated with their children's views regarding rectal bleeding, poor growth, lack of energ y, and poor appetite (p < 0.01). The main parental concerns were the s ide effects of medications and issues concerning their children's futu re, including schooling, job prospects, and marriage. The parents of 1 1 children cited problems with children's behaviour. The parents of se ven cited disruption of work, and those of six named taking holidays. Crohn's disease in children, in addition to being a symptomatically di sabling condition, has a great impact on the health-related quality of life of both sufferers and their parents. The questionnaire was a use ful instrument, and with some adjustment it can be used again in large group studies.