Mukoviszidose eV supports quality development in cystic fibrosis outpatient clinics

18.09.2019 15:51

In Germany, people with cystic fibrosis are treated in specialized outpatient clinics, which are usually affiliated with hospitals. These facilities face many structural and financial challenges due to the unique nature of treating a rare disease. The Mukoviszidose eV supports the quality development of CF outpatient clinics through various projects: It operates a Germany-wide register, carries out a certification process for the outpatient clinics and now, with the patient satisfaction survey, also offers a project to record the subjective view of those affected on their care facility.

The patient satisfaction survey was financed by Mukoviszidose eV and created in collaboration with a voluntary project group made up of doctor and patient representatives. The data was collected by an external service provider, the BQS Institute for Quality and Patient Safety. After completing the survey, all cystic fibrosis outpatient clinics cooperating with the project received outpatient-specific evaluations with their patients' data. These results provide outpatient clinics with information about the areas in which their patients are satisfied and in which areas there is still room for improvement. The data is analyzed and discussed internally and together with outpatient patient advisory boards.

“The structural participation of the patient councils is a central concern of the association and an important reason for conducting and financing the survey,” explains Dr. Miriam Hühner, in the management of the association responsible for the departments of research, therapy promotion and health policy. “Many of the currently existing patient advisory boards were founded as a result of our first patient satisfaction survey in 2011, and we assume that this survey will also lead to the establishment of new advisory boards.” The central task of the patient advisory boards is to mediate between the treatment team and patients Introducing the patient's perspective into joint discussions with the outpatient representatives. They therefore play an important role in the quality development of CF outpatient clinics, because experience has shown that patients who feel well cared for and satisfied demonstrate better treatment implementation.

Strengthening patients and quality of care as the central goals of the survey

Mukoviszidose eV has now published a results report for the project, which can be downloaded from the association's website. The results of the survey show that many patients and parents rate their care facility positively. This is certainly due primarily to the high level of commitment of the treatment teams, which sometimes also compensates for weaknesses in the care structure. The report not only presents the combined results of all participants, but also contains many hints and tips that can help in evaluating the outpatient-specific results.

“In addition to collecting and evaluating a lot of interesting detailed information for the individual outpatient clinics, our central project goals are to promote quality development in the outpatient clinics and to enable patients to take an active part in the care,” emphasizes Hühner. To further support this, the association has already offered a training event for patient advisory councils.