Patients' fears and unmet needs in inflammatory bowel disease

Summary The management of chronic illness is becoming increasingly patient‐centred. Although patients with inflammatory bowel disease have a normal life expectancy, most individuals experience an impact of inflammatory bowel disease on their daily lives as well as on their attitudes, fears and beliefs. Although currently available therapies for ulcerative colitis and Crohn's disease are becoming increasingly effective, there are still many unmet needs to address in this patient population. Physicians and patients' spouses or significant others underestimate the type and severity of problems reported by inflammatory bowel disease patients. Physical problems are frequently measured using disease activity indices. Emotional and social problems are reported using quality of life questionnaires and other specific measurement tools pertinent to the question of interest. Studies have indicated a poorer physical and emotional function in inflammatory bowel disease patients than in the general population. Effective therapies, both medical and surgical, produce significant improvements in the general and disease‐specific quality of life. The quality of life is worse when the disease is more severe. Concomitant anxiety or depression appears to impair the quality of life even further. Common fears include the possibility of unanticipated flares, the need for surgery, poor energy levels and the side‐effects of medication. Recent studies have suggested that more prominent patient participation in management has the potential for greater patient satisfaction, better outcomes and more efficient health resource utilization. Thus, future studies should focus not only on ensuring the wider availability of effective therapies, but on increasing access to health care that is tailored to individuals — more structure for some and more independence and self‐management for others, with health provider supervision.