RT Journal Article
SR Electronic
T1 From registry to quality management: the German Cystic Fibrosis Quality Assessment project 1995–2006
JF European Respiratory Journal
JO Eur Respir J
FD European Respiratory Society
SP 29
OP 35
DO 10.1183/09031936.00056507
VO 31
IS 1
A1 M. Stern
A1 B. Wiedemann
A1 P. Wenzlaff
A1 on behalf of the German Cystic Fibrosis Quality Assessment group
YR 2008
UL http://erj.ersjournals.com/content/31/1/29.abstract
AB Since 1995, the German Cystic Fibrosis Quality Assessment project has collected demographic data and outcome parameters. It aims to develop tools for quality management. The basic data of 6,835 patients has 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. The mean age of all patients has increased from 13.9 yrs in 1995 to 17.7 yrs in 2005, and the percentage of adult patients has increased from 28.4 to 43.4%. Benchmarking diagrams and centre reports indicated considerable differences between the centres. The achievement of basic aims at the age of 6, 12 and 18 yrs indicated a positive development in 1995 to 2005. In 2005, median age at death was 23.7 yrs and the median cumulative survival was 37.4 yrs. Mortality correlated with a BMI <19 kg·m−2 and an FEV1 <80%. No sex gap in mortality was detected. “Learning from the best” is now possible. Further improvements in the system of cystic fibrosis care are required, such as: defining alarm signals for early treatment; involvement of patients and their families in quality management; auditing; benchmarking; and in-house training.