From registry to quality management: The German CF Quality Assessment project 1995–2006

¹ University of Tübingen, University Children's Hospital, Hoppe-Seyler-Str. 1, 72076 Tübingen, Germany
² Technical University, Institute for Medical Informatics and Biometrics, 01307 Dresden, Germany
³ Centre for Quality and Management in Health Care, (ZQ Hannover), Berliner Allee 20, 30175 Hannover, Germany

^* To whom correspondence should be addressed. E-mail: martin.stern{at}med.uni-tuebingen.de.

	Abstract

Since 1995, the German cystic fibrosis quality assessment project is collecting demographic data and outcome parameters. It aims at developing tools for quality management.

The basic data of 6,835 patients have been collected annually by 93 centres. Weight for height and body mass index (BMI) indicated nutritional status and forced expiratory volume in one second (FEV₁) served as the central respiratory parameter. Data on mortality and survival were calculated.

Mean age of all patients has increased from 13.9 in 1995 to 17.7 years in 2005 and the percentage of adult patients from 28.4 to 43.4%. Benchmarking diagrams and centre reports indicated considerable differences between the centres. Achievement of basic aims at the age of 6, 12 and 18 years indicated a positive development in 1995 to 2005. Median age at death was 23.7 years in 2005; median cumulative survival 37.4 years. Mortality correlated with a BMI below 19 kg·m^-2 and FEV₁ below 80%. No gender gap in mortality was detected.

"Learning from the best" is now pos-sible. Further improvements in the system of cystic fibrosis care are required: defining alarm signals for early treatment, involvement of patients and their families in quality management, auditing, benchmarking and in-house training.