BACKGROUND: The European cystic fibrosis (CF) Society Standards of Care were set to facilitate the delivery of high-quality care throughout Europe. However, their implementation may be difficult for less economically advantaged countries. This survey was performed to explore the gap in the knowledge of the level of CF care in Eastern Europe. METHODS: Questionnaires were sent online to one CF professional and one CF patient representative for every Eastern European country. RESULTS: Although most respondents indicated the presence of CF centres, disparities in their framework among individual countries and between them and the European CF Standards of Care became apparent. A minority of countries achieved CF centre recognition by the government (6 of 16), provided CF care for adults (6 countries) and had a multidisciplinary team with all team members represented (2 countries). Patients were significantly more critical in the evaluation of various aspects of CF care than physicians, especially in the Balkan region. CONCLUSIONS: The survey results indicate that the organization and level of CF care across Eastern Europe is largely variable and lacks some of its fundamental attributes in several countries.

Cystic Fibrosis Europe and Dutch Cystic Fibrosis Foundation Baarn Netherlands

Department of Medical Microbiology 2nd Faculty of Medicine Charles University and Motol University Hospital Prague Czech Republic

Institute of Applied Mathematics and Information Technologies Faculty of Science Charles University Prague Czech Republic

Institute of Mother and Child Warsaw Poland; Cystic Fibrosis Centre Dziekanów Leśny Poland

J Cyst Fibros. 2018 Jul;17(4):423-424. doi: 10.1016/j.jcf.2018.05.007. PubMed

Citace poskytuje Crossref.org

The future of cystic fibrosis care: a global perspective