From Cystic Fibrosis Registry To Quality Management

Main Category: Cystic Fibrosis
Article Date: 19 Dec 2007 - 1:00 PDT

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Since 1995, the German Cystic Fibrosis Quality Assessment project has been collecting demographic data and outcome parameters from 6,835 patients treated by 93 centres, in order to improve healthcare for cystic fibrosis (CF) patients. Coverage of 83% of patients has been achieved in Germany.

Martin Stern (University of Tübingen, University Children's Hospital, Tübingen, Germany) and his colleagues analysed central nutritional and lung function data, as well as mortality and survival.

In the last 11 years, the mean age of CF patients has increased from 13.9 to 17.7 years, and the percentage of adult patients from 28.4 to 43.4%. The median cumulative survival is 37.4 years in Germany. Mortality correlates with unfavourable nutritional status and lung function, but not with Pseudomonas infection. No gender difference is detected for mortality.

Analysis of centre care indicates considerable differences between centres, which necessitates intensive quality management.

According to the authors of the study, many lessons have been learned. Learning from the best is now possible by benchmarking.

There is a strong need for defining alarm signals for early treatment. Patients and their families are involved in assessing quality of life. Reinforcement of centre compliance by financial support and by direct benefits (such as individual follow-up graphs, formation of quality groups, improvement of the software system used) are instrumental. Guided planning of structures and strategies in CF care is now an absolute must. International cooperation through the new European Registry will further improve CF healthcare in significant ways.

European Respiratory Journal