Standards of quality of CF-centers

Question

Hello,
as it came repeatedly to negligences in my treating CF center, I am in general insecure, if I am still in good hands there. I have the feeling to point at all things myself, and that only in case of request it is thought about something. As long as it concerns things, where I can intervene, that is still all right (as in case of accidentally wrongly prescribed drugs), but concerning some questions, I do not really have the specific knowledge.
How do I recognize as a patient, if my CF center follows the actual guidelines (in case there are any), e.g. concerning the frequency of doing certain investigations or concerning hygiene? Is there a ranking of CF-centers, so that one can probably decide to have a longer way in order to have a better treatment?
Many thanks for your answer in advace.

Answer

Hello!
In advance: There are general guidelines for the care of CF patients (1). We have good quality of care if it is guaranteed that the patients are cared for long-term and in a competent way in the CF center. Data of the American Cystic Fibrosis Foundation and of the German quality assurance show, that there are significant differences between centers concerning the health status of the patients. Centers with very good results of the lung function, measured via the FEV1, often also had good results concerning the nutritional status of their patients. This seems to be related among others to the frequency of visits, of the investigations, the sputum cultures and the therapeutic frequency. Many CF centers attempt, for example, in the German Benchmarking project of the Mukoviszidose e.V. to learn from the best and to improve their own quality of care. A good center is characterized by the constant effort for improvment and not only by good results at a single timepoint of investigation.
At the moment the data of the German Benchmarking project are not available for the public, only the participaiting centers have transparency of data among themselves. However, the patient representatives work on making the data access public.
In your case I would recommend to you, to talk to the head of your center, and to formulate your worries and to demand the realization of the guidelines and the European Standards of Care. The knowledge about the standards of care is also important on your side.
Furthermore, it is for sure of advantage, if you are interested with the patient/parent-representative in the participation of your center in projects for the continuous improvment of quality and if you incourage them. Because also a center is gaining with the engagement of its patients. Also the participation in the German-wide survey of satisfaction of patients, which is plannend for 2011 (supported by the Mukoviszidose e.V.), can help, to show probable deficiencies of the own center and to identify potentials of improvment.

1 Eitan Kerem, Steven Conway, Stuart Elborn, Harry Heijerman. Standards of care for patients with cystic fibrosis: a European consensus Journal of Cystic Fibrosis 4 (2005) 7 – 26

Yours sincerely,
Prof. Helmut Ellemunter

27.06.2011