title: Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom.
abstract: BACKGROUND
  This study aimed to determine the societal economic burden and health-related quality of life (HRQOL) of cystic fibrosis (CF) patients in the UK.
  
  
  METHODS
  A bottom-up cost-of-illness, cross-sectional, retrospective analysis of 74 patients was conducted aiming to estimate the economic impact of CF. Data on demographic characteristics, health resource utilisation, informal care, productivity losses and HRQOL were collected from questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) instrument.
  
  
  RESULTS
  Using unit costs for 2012 we found that the average annual cost for a CF patient was €48,603, with direct health care costs amounting to €20,854 (42.9 % of total costs), direct non-health care costs being €21,528 (44.3 %) and indirect costs attributable to productivity losses being €6,222 (12.8 %). On average, the largest expenditures by far were accounted for by informal care (44.1 %), followed by medications (14.5 %), acute hospitalisations (13.9 %), early retirement (9.1 %) and outpatient and primary health care visits (7.9 %). Sharp differences existed depending on whether CF patients were in need of caregiver help (€76,271 versus €26,335). In adult CF patients, mean EQ-5D index scores were 0.64 (0.93 in the general population) and mean EQ-5D visual analogue scale scores were 62.23 (86.84 in the general population); among caregivers, these scores were 0.836 and 80.85, respectively.
  
  
  CONCLUSIONS
  Our analysis highlights the importance of the economic and quality of life consequences of CF from a societal perspective. The results highlight that beyond conventional costs such as acute hospitalisations, medication and outpatient and primary care visits, indirect costs related to informal care and early retirement, have significant societal implications. Similarly, our analysis showed that the average EQ-5D index score of adult CF patients was significantly lower than in the general population, an indication that a methodological bias may exist in using the latter in economic analyses.
  
  
  CONCLUSIONS
  CF poses a significant cost burden on UK society, with non-health care and indirect costs representing 57 % of total average costs, and HRQOL being considerably lower than in the general population.
authors.affiliation: Department of Social Policy and LSE Health, London School of Economics and Political Science, Houghton Street, London, WC2A 2AE, England. a.n.angelis@lse.ac.uk.
authors.forename: Aris
authors.initials: A
authors.lastname: Angelis
authors.affiliation: Department of Social Policy and LSE Health, London School of Economics and Political Science, Houghton Street, London, WC2A 2AE, England. p.g.kanavos@lse.ac.uk.
authors.forename: Panos
authors.initials: P
authors.lastname: Kanavos
authors.affiliation: University of Castilla-La Mancha, Talavera de la Reina, Toledo, Spain. Julio.LopezBastida@uclm.es.|Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Madrid, Spain. Julio.LopezBastida@uclm.es.
authors.forename: Julio
authors.initials: J
authors.lastname: López-Bastida
authors.affiliation: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Madrid, Spain. renata.linertova@sescs.es.|Canary Islands Foundation for Health and Research (FUNCIS), Las Palmas de Gran Canaria, Spain. renata.linertova@sescs.es.
authors.forename: Renata
authors.initials: R
authors.lastname: Linertová
authors.affiliation: Department of Social Policy and LSE Health, London School of Economics and Political Science, Houghton Street, London, WC2A 2AE, England. e.m.nicod@lse.ac.uk.
authors.forename: Elena
authors.initials: E
authors.lastname: Nicod
authors.affiliation: Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC), Madrid, Spain. pserrano@gobiernodecanarias.org.|Evaluation and Planning Service at Canary Islands Health Service, Santa Cruz de Tenerife, Spain. pserrano@gobiernodecanarias.org.
authors.forename: Pedro
authors.initials: P
authors.lastname: Serrano-Aguilar
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000706:statistics & numerical data; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D003550:Cystic Fibrosis / Q000191:economics* / Q000503:physiopathology / Q000523:psychology*; D005260:Female; D017048:Health Care Costs / Q000706:statistics & numerical data; D006295:Health Resources / Q000191:economics; D006304:Health Status; D006801:Humans; D008297:Male; D010045:Outpatients; D005791:Patient Care / Q000191:economics; D011320:Primary Health Care / Q000191:economics; D011788:Quality of Life; D012179:Retirement / Q000191:economics; D012189:Retrospective Studies; D012931:Social Environment; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult