248 “muko.fit” – a comprehensive health-care approach for patients with CF with critical causes and/or psycho-social challenges. First results regarding the initial 12 months within the project

Abstract

Median survival with CF increased considerably to presently 40 y for German patients. This improvement may not affect patients with high psycho-social burden, as these patients frequently reveal a rapid decline of lung function and/or of nutritional status. This fringe group frequently report strong social challenges. Objective muko.fit is a comprehensive health-care approach launched by the German CF association. It offers, for a minimum of one year, enhanced support to patients with CF with critical causes with the aim of accompanying the patients with individual strategies to help themselves. These include the individual's physical and social situation. Methods Between the attending physicians, patients and external specialists an individualized action plan for 12 month is established. This plan is supported by telephone contact with the external social worker and sports coach. Results To date, 49 patients from 39 CF-centres have joined the program. The first results presented are from 41 patients (mean age 19.1 y; 21f; 22 >18 y). FEV1 was maintained or improved in 68% of cases. In total, 180 measures were applied. These were made of: local sports/physical therapy 25%, compliance/transition 25%, social problems 18%, and other activities 32%. Patients were interviewed after the 12 month period. 68% rated the support as above average to outstanding, with 60% stating it had improved their life on a daily basis. Conclusion The initial results of this project in accompanying this fringe group are promising. It has shown an increase of attendance at the CF-centres as well as their daily self medication. Structuring their daily life seems to stabilize patients' health.