HOME HELP FEEDBACK SUBSCRIPTIONS ARCHIVE SEARCH TABLE OF CONTENTS		QUICK SEARCH:   [advanced] Author: Keyword(s): Year:  Vol:  Page:

This Article Full Text Full Text (PDF) Alert me when this article is cited Alert me if a correction is posted Permissions Request Permissions Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in ISI Web of Science Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via ISI Web of Science (1) Citing Articles via Google Scholar Google Scholar Articles by Stern, M. Search for Related Content PubMed PubMed Citation Articles by Stern, M.

From registry to quality management: the German Cystic Fibrosis Quality Assessment project 1995–2006

¹ University of Tübingen, University Children's Hospital, Tübingen, ² Technical University, Institute for Medical Informatics and Biometrics, Dresden, and ³ Centre for Quality and Management in Health Care, Hannover, Germany.

CORRESPONDENCE: M. Stern, University of Tübingen, University Children's Hospital, Hoppe-Seyler-Str. 1, 72076 Tübingen, Germany. Fax: 49 7071295477. E-mail: martin.stern{at}med.uni-tuebingen.de

Keywords: Benchmarking, centre care, cystic fibrosis, epidemiology, patient registry, quality management

Received: May 9, 2007
Accepted August 27, 2007

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.