Guided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial

Background Ulcerative colitis is managed mainly in secondary care by regular outpatient reviews done by specialist clinicians. Alternatives would be to discharge patients to primary care or to provide open-access clinics, but neither of these options reduce patients' dependency on doctors or allow patients' involvement in disease management. We did a randomised controlled trial to assess an alternative to traditional outpatient care. Methods We randomly assigned 203 patients with ulcerative colitis who were undergoing hospital follow-up to receive patient-centred self-management training and follow-up on request (intervention group), or normal treatment and follow-up (control group). The main outcome was the interval between relapse and treatment, and secondary outcomes were rates of primary and secondary care consultation, quality of life, and acceptability to patients. Analysis was by intention to treat. Findings Intervention patients had relapses treated within a mean of 14.8 h (SID 19.1) compared with 49.6 h (65.1) in controls (difference 34.8 h [95% CI 16.4-60.2]). Furthermore, intervention patients compared with controls made significantly fewer visits to hospital (0.9 vs 2.9 per patient per year, difference 2.0 [1.6-2.7]) and to the primary-care physician (0.3 vs 0.9 per patient per year, difference 0.6 [0.2-1.1], p<0.006). Only two patients in the intervention group preferred traditional management. Health-related quality-of-life, scores were unchanged in both groups. Interpretation Self-management of ulcerative colitis accelerates treatment provision and reduces doctor visits, and does not increase morbidity. This approach could be used in long-term management of many other chronic diseases to improve health-service provision and use, and to reduce costs.