Insights into the cystic fibrosis care in Eastern Europe: Results of survey

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.