- to establish improvement of quality of care and to establish a quality culture in treatment of Inflammatory Bowel Disease (IBD) patients; $L- to create guidelines; to come to protocols in the management of the various aspects of this disease. These guidelines are to be developed after research of the quality of care in the participating hospitals within their respective health care systems
The terms ulcerative colitis and Crohn's disease designate a group of inflammatory diseases of the large and small intestine. The term 'Inflammatory Bowel Disease.' is often used to delineate these two chronic diseases of unknown origin. The first signs often develop at an early age; early recognition, good management, and continuity of care may have important consequences for the quality of the individual's life. Organization of health care (health care structure, accessibility of health-care, treatment policy, health care insurance, financial aspects etc.) diverge widely among different European countries. Since these differences may affect the patients well-being, IBD needs a multidisciplinary approach by physicians, gastroenterologists, surgeons, dieticians, psychologists, social workers and so further. It is of major importance to provide a better insight into the structural differences in health care systems between the European countries and to relate these differences to the possible effects on quality of life of IBD
This study is carried out as a concerted action with a considerable number of European centers continuing the co-operation which has been created by the previous concerted action, the EC-IBD project. Important aims of this study are: to encourage a close cooperation between three regions in Europe; to measure and describe quality of care in IBD-patients, to create guidelines and protocols for monitoring good quality of care in this patient group, and to stimulate further research and international co-operation concerning quality of care in order to enhance quality of life for these patients. The study will consist of two parts: a retrospective part and a prospective part. Relevant variables are: measure of recurrence, relapse, remission, hospital admissions, extra-intestinal bowel complications, surgical interventions, disease activity, accessibility of health care, financial aspects, type of insurance, social support from relatives and friends.
The main outcomes of the study will be: a guideline/protocol for monitoring quality of life, the description of a health care system which might be used on an European level. Standardization of the measurement of quality of care will make it possible to investigate the influence of multiple variables on quality of life between countries and, within countries, between types of hospitals. This kind of outcomes can only be achieved in an international scientific concerted action.
Quality of life, quality of care, health care system, inflammatory bowel disease, health policy.