title: Economic burden of ambulatory and home-based care for adults with cystic fibrosis.
abstract: OBJECTIVE
  The purpose of this study was to measure costs associated with care for adults with cystic fibrosis, from a societal perspective.
  
  
  METHODS
  Over a 4-week period, 110 participants completed the Ambulatory and Home Care Record, a self-administered data collection instrument that measures costs to the health system, costs to employers, care recipients' direct out-of-pocket expenditures, and time costs borne by care recipients and their family caregivers. Health system costs were based on the costs incurred through expenditures on physicians, hospital clinics, pharmaceuticals, and home care agencies. Out-of-pocket costs were obtained using self-reports by care recipients, and time losses were valued using the human capital approach.
  
  
  RESULTS
  The annual mean societal costs of ambulatory care for cystic fibrosis was $Can29 885 per care recipient (year 2002 value). Time losses incurred by care recipients and their family caregivers accounted for the majority (72%) of these costs, and system costs accounted for the second highest percentage of costs (21%). Although almost all participants (109) recorded out-of-pocket expenditures, these costs accounted for only a small proportion (3%) of total costs.
  
  
  CONCLUSIONS
  Measuring societal costs is necessary for practitioners, managers, and policy decision-makers, to ensure that care recipients and their families receive the necessary resources to provide care.
authors.affiliation: Department of Health Policy, Management and Evaluation, Faculty of Medicine, University of Toronto, Toronto, Ontario, CanadaFaculty of Nursing, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Denise N
authors.initials: DN
authors.lastname: Guerriere
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Tullis
authors.forename: Wendy J
authors.initials: WJ
authors.lastname: Ungar
authors.forename: Jennifer
authors.initials: J
authors.lastname: Tranmer
authors.forename: Mary
authors.initials: M
authors.lastname: Corey
authors.forename: Lesley
authors.initials: L
authors.lastname: Gaskin
authors.forename: Susan
authors.initials: S
authors.lastname: Carpenter
authors.forename: Peter C
authors.initials: PC
authors.lastname: Coyte
mesh_terms: D000328:Adult; D000553:Ambulatory Care / Q000191:economics; D003365:Costs and Cost Analysis; D003550:Cystic Fibrosis / Q000191:economics; D017048:Health Care Costs; D005102:Health Expenditures; D006699:Home Care Services / Q000191:economics; D006801:Humans