Early ReportGuided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial
Introduction
Ulcerative colitis is a chronic inflammatory disorder that affects more than 100 000 people in Britain.1 Symptoms are usually intermittent, and are characterised by episodes of diarrhoea and rectal bleeding punctuated by periods of relative quiescence. A few patients require surgery and are thereby cured, but most are adequately managed with medical therapy. Regular outpatient follow-up by specialist clinicians in secondary care is the normal strategy for management of chronic diseases such as this one. Every year in England, more than 15 million outpatient follow-up consultations are made by patients who have attended clinics for longer than 6 months.2 Most gastroenterologists follow up their colitic patients indefinitely in outpatient clinics.3 Hospital doctors' reasons for long-term follow-up include: a perceived need for review of symptoms, medication, and blood tests; unwillingness to discharge to primary-care management; and a belief that patients expect hospital treatment.4
In addition to the cost of such an approach to health care, several other factors indicate that this might not be the most appropriate method of management: because chronic diseases such as ulcerative colitis, asthma, Parkinson's disease, and arthritis frequently run a relapsing or remitting course, prearranged clinic visits are unlikely to correspond with disease activity; access to clinicians when symptoms are exacerbated normally depends on clinic availability, which often results in delayed initiation of treatment; non-attendance rates are notoriously high in this group of patients (19% in study hospitals); and duplication of clinical activity in primary and secondary care is common.5
Until recently, the debate about reduction of long-term hospital follow-up has concentrated on discharge from hospital and transfer of follow-up to primary care as the main alternative.6, 7, 8 Up to 48% of patients receiving long-term hospital follow-up could be discharged to their family practioners.4 However, most primary-care physicians see few patients with uncommon chronic diseases such as ulcerative colitis (average of 3–4 per 2000 patients), and most are unwilling to take sole responsibility for managing them.9 Open access to hospital clinics is preferred by patients and family practitioners, and can reduce routine hospital visits.10 However, patients still need to see a doctor before treatment of relapse can begin, which inevitably delays onset of therapy.
Patients' participation in treatment of diabetes mellitus results in better metabolic control,11, 12, 13 and reduces morbidity in asthmatic patients.14, 15, 16 We have designed a patient-centred alternative to conventional management for patients with ulcerative colitis. We have produced personalised self-management plans that enable patients to monitor and treat their symptoms, and to refer themselves to hospital when they need additional advice or treatment outside agreed guidelines for care. Such an approach is consistent with the need for health services to provide better-quality information for patients,17 and with the notion of patients' participation in medical decision-making.18, 19 Health professionals in the USA have begun to incorporate patients' perspectives into their practice,20 and policy-makers in Britain are encouraging patients' involvement in disease management.21 In 1997, a UK government white paper22 asserted that “a modern and dependable NHS [National Health Service] means providing easier and faster advice for people about their health and illness, so they are better able to care for themselves and their families”. The effect of guided self-management on routine health-care use or quality of life has not been assessed, although shared decision-making is associated with improved satisfaction and better health outcomes,23, 24 and many patients want to participate more in the management of chronic disease.25
We did a randomised controlled trial to assess the effectiveness of our patient-centred approach to management of ulcerative colitis. Patients collaborated with a clinician to develop personalised self-management regimens, and were offered direct access to outpatient care on request. We postulated that the new method of management would be acceptable to patients, result in a clinically worthwhile reduction in the delay between onset of symptoms and treatment, and reduce outpatient attendances without a concomitant decline in health-related quality of life.
Section snippets
Patients
Any patient older than 16 years with a diagnosis of ulcerative colitis, who was receiving outpatient follow-up, and whose disease was in remission was eligible for entry into the trial. Exclusion criteria included newly diagnosed patients, patients with other illnesses requiring hospital outpatient follow-up, and those who were either unable to read the informed consent datasheet or unable to follow written instructions.
Our trial was based in the gastroenterology departments of four hospitals
Results
Figure 1 shows the flow of participants through the trial. We reviewed 355 sets of patients' notes that identified 313 potentially eligible patients. 61 patients failed to attend on the day of the recruitment clinic (non-attendance rate 19%). 252 patients attended, of whom 215 fulfilled the eligibility criteria, and 203 agreed to participate.
203 patients were enrolled into the study and followed up for a median of 14 months (range 11–18). Table 1 shows characteristics of patients. Intervention
Discussion
Our results show that patients prefer guided self-management to traditional outpatient care, and that this new approach facilitates earlier treatment of relapses and reduces routine follow-up by 70%. Self-management in the treatment of asthma can reduce morbidity and emergency consultations,14, 16 and open-access clinics for patients with inflammatory bowel disease can reduce consultation rates by 11%.10 We have shown that a combination of interventions has a much greater effect than single
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