title: [Cystic fibrosis -- disease burden and health-related quality of life of patients and their caregivers: results of the European BURQOL-RD survey in Hungary].
abstract: BACKGROUND
  Data on disease burden of cystic fibrosis in Hungary are scarce.
  
  
  OBJECTIVE
  To assess quality of life and resource utilisations of patients with cystic fibrosis.
  
  
  METHODS
  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.
authors.affiliation: Budapesti Corvinus Egyetem Budapest Fővám tér 8., 265-ös szoba 1093 Pest Megyei Flór Ferenc Kórház Kistarcsa.
authors.forename: Márta
authors.initials: M
authors.lastname: Péntek
authors.affiliation: Pécsi Tudományegyetem, Általános Orvostudományi Kar Pécs.
authors.forename: György
authors.initials: G
authors.lastname: Kosztolányi
authors.affiliation: Pécsi Tudományegyetem, Általános Orvostudományi Kar Pécs.
authors.forename: Béla
authors.initials: B
authors.lastname: Melegh
authors.affiliation: Országos Korányi Tbc és Pulmonológiai Intézet Budapest.
authors.forename: Adrienn
authors.initials: A
authors.lastname: Halász
authors.affiliation: Ritka és Veleszületett Rendellenességgel élők Országos Szövetsége Budapest.
authors.forename: Gábor
authors.initials: G
authors.lastname: Pogány
authors.affiliation: Budapesti Corvinus Egyetem Budapest Fővám tér 8., 265-ös szoba 1093.
authors.forename: Petra
authors.initials: P
authors.lastname: Baji
authors.affiliation: Budapesti Corvinus Egyetem Budapest Fővám tér 8., 265-ös szoba 1093.
authors.forename: Valentin
authors.initials: V
authors.lastname: Brodszky
authors.affiliation: Budapesti Corvinus Egyetem Budapest Fővám tér 8., 265-ös szoba 1093.
authors.forename: Noémi
authors.initials: N
authors.lastname: Vártokné Hevér
authors.affiliation: Pécsi Tudományegyetem, Általános Orvostudományi Kar Pécs.
authors.forename: Imre
authors.initials: I
authors.lastname: Boncz
authors.affiliation: Budapesti Corvinus Egyetem Budapest Fővám tér 8., 265-ös szoba 1093.
authors.forename: László
authors.initials: L
authors.lastname: Gulácsi
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D017668:Age of Onset; D000368:Aged; D000553:Ambulatory Care / Q000706:statistics & numerical data; D000900:Anti-Bacterial Agents / Q000191:economics / Q000627:therapeutic use; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data*; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003550:Cystic Fibrosis / Q000175:diagnosis / Q000191:economics / Q000453:epidemiology / Q000628:therapy; D004864:Equipment and Supplies; D005260:Female; D017048:Health Care Costs; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D006814:Hungary / Q000453:epidemiology; D007223:Infant; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology / Q000706:statistics & numerical data*; D011788:Quality of Life; D012189:Retrospective Studies; D012648:Self Care; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013997:Time Factors; D055815:Young Adult
chemical_list: D000900:Anti-Bacterial Agents
keywords: EQ-5D; betegségteher; burden of illness; caregivers; cystic fibrosis; cystás fibrosis; gondozók; quality of life; életminőség