Social implications of childhood Crohn's disease.

BACKGROUND: Children with Crohn's disease may have an impaired quality of life.
METHODS: A validated questionnaire was mailed to the parents of all child members of Crohn's in Childhood Research Association (CICRA) (age range, 5-17 years). It investigated aspects of the quality of life of children with Crohn's disease. Sixty-four questionnaires were returned together with another 35 from those outside the defined age range. Patients in the latter group were not included in the analysis.
RESULTS: Of the children investigated, 60% had significant absences from school, with a mean of 3+/-2.8 months' absence in the previous year. Most (53%) thought that their teachers knew nothing about Crohn's disease, and 50% thought that teachers were unsympathetic. Of the 24 who had taken examinations 80% thought they had underachieved because of ill health. Sixty-seven percent of children were unable to participate in sports on a regular basis, 60% felt unable to leave the house, and 50% were unable to play with their friends. Information about Crohn's disease had predominantly come from doctors (89%), information booklets (83%), and nursing staff (42%). The commonest questions asked by the children were: what is Crohn's disease (50%), why me (64%), will it affect my schooling (52%), and will it affect my chances of getting a job (67%).
CONCLUSION: Children with Crohn's disease have a significantly impaired quality of life. They fear everyday childhood activities and fear for their future. These children need sympathetic management, and effort should be concentrated on improving their day-to-day existence to enable them to lead as normal a life as possible.