Health related quality of life and disease burden of patients with cystic fibrosis and their caregivers: Results of the European BURQOL-RD survey in Hungary,Cystás fi brosissal élõ betegek és gondozóik életminõsége és betegségterhei: A BURQOL-RD európai felmérés magyarországi eredményei

Introduction: Data on disease burden of cystic fibrosis in Hungary are scarce. Aim: To assess quality of life and resource utilisations of patients with cystic fibrosis. Method: In a cross-sectional survey (BURQOL-RD project), the EQ-5D-5L questionnaire was applied and healthcare utilisations were retrospectively surveyed. Results: 110 patients participated in the study (age-groups, year: 0–13, N = 48; 14–17, N = 12; ≥18, N = 50), median age at the diagnosis was 1 year. EQ-5D-5L score in age-groups 18–24 and 25–34 was significantly lower than in the general population (p&lt;0.05). 75 patients (68%) attended pulmonology care, 55 patients (50%) were hospitalised in the past 6 and 12 months, respectively, and 57 patients (52%) were taking dornase alpha. Five adult patients (10%) received help from non-professional caregiver. Conclusions: Cystic fibrosis leads to significant deterioration of quality of life. This study is the first from the Central Eastern European region that provides basic inputs for further health economic evaluations of cystic fibrosis care. Orv. Hetil., 2014, 155(42), 1673–1684.</jats:p