DISINTEREST IN LOCAL SELF-HELP GROUPS AMONGST PATIENTS WITH INFLAMMATORY BOWEL-DISEASE IN LEICESTER

An invitation to attend the inaugural meeting of a self-help group and a questionnaire were sent to 2084 patients with inflammatory bowel di sease (IBD). Twelve months later 180 patients who had joined the group (n=90) and a similar number who had not, were sent a second questionn aire seeking why they had or had not, and what functions the group had managed to fulfill. 254 (13%) responded and 138 (7%) joined. Patients with Crohn's disease X(2)=5.43, P=0.02) and women (X(2)=3.80, P<0.05) were more likely to join. These differences were not seen amongst the Asians who responded to the questionnaire (X(2)=0.01, ns) who were mu ch less likely to respond (X(2)=15.1, P<0.0001). Responders wanted the group to provide an information service (85%) to give an opportunity to discuss problems with other patients (77%) and to promote the needs of people with IBD to the local community. 88% (n=159) responded to t he second questionnaire, including 83 from joiners and 76 from non-joi ners. Forty-seven (57% of joiners) had attended meetings. Answers indi cated the group provided useful general information (99%), mutual supp ort (66%), information on medical research (70%) and an opportunity to meet (60%). Amongst non-joiners, 81% (n=62) thought such a group migh t be useful. Reasons for not joining included: too busy (40%), too far away (23%), managing without support (28%) and reluctance to broadcas t their illness (20%).