N. V. Hevér

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

Bevezetes: Magyarorszagon kevesse ismertek a cystas fibrosis betegseg egyeni es tarsadalmi terhei. Celkitűzes: A cystas fibrosissal elő betegek es gondozoik egeszseggel osszefuggő eletminősegenek es terheinek felmerese. Modszer: Az europai BURQOL-RD-projekt kereteben keresztmetszeti kerdőives felmerest vegeztek EQ-5D-5L-kerdőivvel es retrospektiven vizsgaltak az egeszsegugyi ellatasok igenybevetelet. Eredmenyek: 110 beteg (korcsoportok, ev: 0–13, N = 48; 14–17, N = 12; ≥18, N = 50) vett reszt a vizsgalatban, a diagnozis felallitasakor az eletkor median 1 ev volt. Az EQ-5D-5L-indexertek szignifikansan alacsonyabb volt a 18–24 es 25–34 eves korosztalyban a hazai populacios atlagnal (p<0,05). Tudőgyogyaszati szakvizsgalaton 75 beteg (68%) jart, korhazi felvetelre 55 beteg (50%) kerult az elmult 6, illetve 12 honapban, dornase alfa-kezelest 57 beteg (52%) kapott. Ot felnőtt beteget (10%) segitett kozeli csaladtag nem hivatasos gondozokent. Kovetkeztetesek: A cystas fibrosis jelentős eletminőseg-csokkenessel j...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<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.

Cystás fibrosissal élő betegek és gondozóik életminősége és betegségterhei: a BURQOL-RD európai felmérés magyarországi eredményei@@@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

Bevezetes: Magyarorszagon kevesse ismertek a cystas fibrosis betegseg egyeni es tarsadalmi terhei. Celkitűzes: A cystas fibrosissal elő betegek es gondozoik egeszseggel osszefuggő eletminősegenek es terheinek felmerese. Modszer: Az europai BURQOL-RD-projekt kereteben keresztmetszeti kerdőives felmerest vegeztek EQ-5D-5L-kerdőivvel es retrospektiven vizsgaltak az egeszsegugyi ellatasok igenybevetelet. Eredmenyek: 110 beteg (korcsoportok, ev: 0–13, N = 48; 14–17, N = 12; ≥18, N = 50) vett reszt a vizsgalatban, a diagnozis felallitasakor az eletkor median 1 ev volt. Az EQ-5D-5L-indexertek szignifikansan alacsonyabb volt a 18–24 es 25–34 eves korosztalyban a hazai populacios atlagnal (p<0,05). Tudőgyogyaszati szakvizsgalaton 75 beteg (68%) jart, korhazi felvetelre 55 beteg (50%) kerult az elmult 6, illetve 12 honapban, dornase alfa-kezelest 57 beteg (52%) kapott. Ot felnőtt beteget (10%) segitett kozeli csaladtag nem hivatasos gondozokent. Kovetkeztetesek: A cystas fibrosis jelentős eletminőseg-csokkenessel j...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<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.