Economic Burden of Ambulatory and Home-Based Care for Adults with Cystic Fibrosis

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. Conclusion: 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.