The implementation of standards of care in Europe: state of the art

Abstract

The care and condition of people with cystic fibrosis (CF) in 34 European countries is reported using data obtained from publications, registries and professionals providing CF patient care. Care and outcomes differ markedly between countries. Although the 2005 European standards of patient care publication was widely known, in many countries there were no specialized CF centres. In only a minority of countries was funding considered adequate and in some countries costs covered by patients compromised care. Only 15 countries had a national CF patient registry. Neonatal screening was routine in only 10 countries, but this included 59% of European infants. The initiatives of EuroCareCF Workpackage 1 to form networks for professionals working with CF patients are described. Suggestions for the future include at least one adequately staffed CF Centre in each country, improved funding, neonatal screening, national patient registries and the formation of national CF parent and patient organisations.