Disinterest in local self-help groups amongst patients with inflammatory bowel disease in Leicester

Abstract

An invitation to attend the inaugural meeting of a self-help group and a questionnaire were sent to 2084 patients with inflammatory bowel disease (IBD). Twelve months later 180 patients who had joined the group (n = 90) and a similar number who had not, were sent a second questionnaire 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 chi 2 = 5.43, P = 0.02) and women (chi 2 = 3.80, P < 0.05) were more likely to join. These differences were not seen amongst the Asians who responded to the questionnaire (chi 2 = 0.01, ns) who were much less likely to respond (chi 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 the second questionnaire, including 83 from joiners and 76 from non-joiners. Forty-seven (57% of joiners) had attended meetings. Answers indicated the group provided useful general information (99%), mutual support (66%), information on medical research (70%) and an opportunity to meet (60%). Amongst non-joiners, 81% (n = 62) thought such a group might be useful. Reasons for not joining included: too busy (40%), too far away (23%), managing without support (28%) and reluctance to broadcast their illness (20%).