Systematic review: knowledge and educational needs of patients with irritable bowel syndrome

Educational programs have been used as a control condition in trials on psychological therapies for irritable bowel syndrome (IBS). An optimal control condition should have all logistic features of the experimental intervention, except the active component, but also have basic therapeutic benefit for the patient. The aim of the present study is to systematically determine patients' educational needs on the basis of the (mis)conceptions that they have of their disease and their reported desire for information to optimize the control intervention in IBS research. A systematic review of studies on the knowledge and educational needs of IBS patients in terms of their condition was performed. Studies published as full text in the English language in peer-reviewed journals and that included adult IBS patients diagnosed according to the Manning or Rome I, II, or III criteria were selected. Eight studies involving 2132 patients were included. When focusing on misconceptions of patients, the most prevalent are that IBS is caused by dietary factors, food allergies and intolerance (37-90%), heredity (52%), or a lack of digestive enzymes (52%); IBS is a form of colitis (43%); and will last a lifetime (31-54%), develop into cancer (15-49%), or worsens with age (48%). Patients are 'unhappy' with their level of knowledge or feel poorly informed (65%). They want information about the diagnostic process, which foods to avoid (63%), causes (62%), coping strategies (59%), new medications (55%), course (52%), and the role of psychological factors (51%). IBS patients do have a large variety of educational needs. Educational programs optimally addressing these needs can be used adequately as a placebo control condition in research on psychological interventions.