Review article: what do patients with inflammatory bowel disease want for their clinical management?

Summary Background  The patient’s perceptions of benefits and risks of treatment differ from those of physicians, yet this topic is rarely explored in ulcerative colitis or Crohn’s disease. Aim  To present a patient’s perspective on care for their colitis, to consider how patients’ views will influence preliminary proposals for standards of care, and to discuss the different priorities of patients and physicians. Methods  Description of an individual patient’s journey from diagnosis of ulcerative colitis to colectomy, compared with priorities proposed by a patient‐based organization (National Association of Colitis and Crohn’s disease). Results  Awareness of colitis in primary care, prompt referral, timely investigation and specialist care if admitted to hospital are shared goals of patients and physicians. Patients are generally prepared to accept higher risks from medical treatment to avoid their undesirable outcomes (especially colectomy) than physicians will on their behalf. There has been little systematic study of this disparity in ulcerative colitis. Under‐reporting the symptom burden, tolerance of treatment side effects, substantial lifestyle changes and willingness to explore any treatment options are characteristic coping strategies. Physicians should be alert to coping strategies, with a willingness to seek second opinions. Conclusion  Perceptions of risk and benefit differ between patients and physicians, and recognition of this difference is a starting point for difficult clinical decision‐making.