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[Mucoviscidosis quality assurance. Problems, success and prospects 1995-1998]
1Universitäts-Kinderklinik, Tübingen.
Insights
The German cystic fibrosis (CF) quality assurance project found that smaller CF centers had poorer patient outcomes. Improvements were noted between 1995-1997, but structural quality needs enhancement.
Area of Science:
- Medical Research
- Public Health
- Pediatrics
Context:
- The German "quality assurance in cystic fibrosis" project involves 97 centers and 4,306 patients.
- Most German CF patients, including adults, receive care from pediatric institutions.
- Data collection and evaluation are conducted anonymously.
Purpose:
- To improve quality of life and life expectancy for cystic fibrosis (CF) patients in Germany, aligning with international standards.
- To identify factors influencing CF patient outcomes within the German healthcare system.
Summary:
- Analysis of nutrition and lung function data revealed less favorable results for patients treated at very small CF institutions (fewer than 20 patients).
- Between 1995 and 1997, improvements in certain parameters were observed, particularly in school-aged children and young adults.
- The mean cumulative survival for CF patients in Germany was 29.3 years in 1997, comparable to European averages.
Impact:
- Highlights the need for structural quality improvements in CF care delivery within Germany.
- Suggests that optimizing the size and resources of CF centers could enhance patient outcomes.
- Provides benchmark data for German CF care, facilitating international comparisons and driving quality initiatives.
Abstract:
The German project "quality assurance in cystic fibrosis" collects data from 97 CF centres with 4,306 patients. Project goals are improvement of quality of life and life expectancy catching up with international standards. Collection of data and evaluation are done anonymously. In Germany, most patients including adults are under care of paediatric institutions. Nutrition and lung function data with decisive prognostic significance (weight for height, one-second-capacity) exhibited less favourable results for patients treated by very small institutions (less than 20 patients). Between 1995 and 1997 some parameters could be improved particularly in pupils children and young adults. In Germany, mean cumulative survival was 29.3 years for 1997. This figure is comparable to other European countries. However, further improvement with respect to quality of structure has to be made.