Inflammatory bowel disease — empowering the patient and improving outcome

Summary

Inflammatory bowel disease, in common with most chronic diseases, is managed by specialist clinicians during regular clinic follow-up visits. Patients spend approximately 1 h per year with clinicians, with few provisions made for patient participation in their own management for the remainder of the year, resulting in dependence and disempowerment. The provision of regular, fixed clinic appointments for diseases that follow an unpredictable relapsing/remitting pattern results in inefficiencies for health services and inconvenience for patients, as well as high rates of noncompliance. Self-care is a normal human function and accounts for the management of three-quarters of all episodes of ill health. More formalized applications include patients and doctors working collaboratively to develop a set of guidelines which patients use to manage their chronic disease themselves. Recent studies have shown that, in patients with stable ulcerative colitis, self-management results in reduced health service utilization, speedier access to treatment and high levels of patient acceptability, without compromising health outcomes. There are a number of barriers to the effective implementation of guided self-management at many levels. Clinicians may be reluctant to pass control of treatment changes to patients, particularly the use of steroids. Access to clinics at short notice may be difficult and some patients themselves prefer a system in which all decisions are made by doctors. Research into guided self-management is ongoing as the long-term outcomes are uncertain. However, there are indications that passing ‘ownership of management’ back to patients may improve compliance as patients realize their own responsibilities for remaining well.