British gastroenterologists' care profile for patients with inflammatory bowel disease: the need for a patients' charter

Abstract

The follow-up of patients with inflammatory bowel disease (IBD) was investigated using a postal questionnaire sent to 359 members of the British Society of Gastroenterology (BSG), of whom 235 replied. Of patients with IBD, 96% were weighed on each out-patient clinic review and over 60% had their full blood count checked. Although few centres (20%) have computerized recall of their patients for cancer surveillance, 96% did perform such surveillance on patients with ulcerative colitis. The mean duration of disease before surveillance was initiated was 9.6 years. Most clinicians (80%) only surveyed patients with disease extending beyond the transverse colon. Despite recent work on cancer risk age is relatively unimportant to 76% of clinicians in their decision to screen or not. Only 24% of clinicians undertake cancer surveillance in patients with Crohn's disease but these use similar criteria in their selection of patients. Few other tests were performed regularly. Clinic services vary considerably from centre to centre, 62% offer open access to patients with IBD, 8% have a stoma nurse in clinic and 17% a dietitian. Eighty-four per cent of respondents provide educational books and 22% videos. Forty-four per cent of clinicians refer patients for advice to fellow sufferers. We believe there should be a uniform minimum standard of care and services available in clinics throughout the United Kingdom and propose a patients' charter to ensure that this occurs. Such care profiles provide guidelines to those who need to develop standards for resource management.