Factors of importance for health care seeking in irritable bowel syndrome and the use of patient education.

Sammanfattning: Irritable bowel syndrome (IBS) is a common functional gastrointestinal (GI) disorder. The etiology and pathophysiology are incompletely understood and treatment options are limited. IBS is a benign disease, but many patients experience severe GI symptoms and low health related quality of life (HRQOL), leading to health care consumption and high economical costs to the society. Many IBS patients express that they do not receive thorough explanations about their symptoms, and have feelings of not being taken seriously in their contacts with the health care system. The aims of the present thesis were to identify factors of importance for health care seeking in IBS, to assess how much and what kind of knowledge IBS patients have about their disorder, and to develop and evaluate a structured patient education for IBS patients, an IBS school. Persons, who did not seek health care for their GI symptoms (non-consulters), and patients who had sought health care, were investigated using questionnaires for comparison of GI and psychological symptoms, HRQOL and coping resources between the groups. Non-consulters had similar GI symptom severity, but less severe psychological symptoms, better HRQOL and coping resources, compared with the patients. IBS patients, referred from primary care to a gastroenterologist, completed a questionnaire regarding knowledge of IBS. Only a minority of the patients had received enough information and a large proportion was dissatisfied with their knowledge. The patients primarily wanted information about what they can do in order to improve symptoms, treatment options and causes of the symptoms. In a pilot study, to develop the IBS school, 12 patients were included. The IBS school consisted of six sessions once per week, two hours each time, in groups of five to seven patients. The patients were very satisfied with the construction of the education, as well as with the new knowledge they had received. There were also tendencies towards improved HRQOL and reduced GI symptoms in this small group of patients. Thereafter we included 143 patients in a study to evaluate the effects of the IBS school compared with written patient information, a guidebook. The patients were randomized to either participate in the IBS school or to receive the guidebook. The effects were evaluated with questionnaires measuring knowledge of IBS, GI and psychological symptom severity and HRQOL. The IBS school group increased their knowledge, and reduced their GI symptom severity and GI-specific anxiety more than the patients in the guidebook group. The patients in the IBS school group also improved their HRQOL after the patient education. Conclusions: IBS non-consulters have similar GI symptom severity compared with the patients, but manage their symptoms due to better psychological well-being and HRQOL. Many IBS patients have correct knowledge about their disorder, but are not satisfied with that knowledge and mainly want information about what they can do in order to improve their symptoms in daily life. The IBS school is appreciated by the patients and seems to be superior to written information in order to contribute to increased well-being for IBS patients.