Abstract
BackgroundThis study aimed to determine the societal economic burden and health-related quality of life (HRQOL) of cystic fibrosis (CF) patients in the UK.MethodsA 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.ResultsUsing 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.DiscussionOur 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.ConclusionCF 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.
Highlights
This study aimed to determine the societal economic burden and health-related quality of life (HRQOL) of cystic fibrosis (CF) patients in the UK
Because of the lack of a publicly available, NHS-based CF registry in the UK, a convenience sample of patients was recruited from the Cystic Fibrosis Trust (CFT) that holds its own anonymised register of patients
Beyond the average annual total cost of €48,603, we found that informal care, medication, acute hospitalisations, early retirement and outpatient and primary health care visits represented the highest expenditures
Summary
This study aimed to determine the societal economic burden and health-related quality of life (HRQOL) of cystic fibrosis (CF) patients in the UK. Cystic fibrosis (CF) is one of the most prevalent, fatal, inherited rare disorders among people of Caucasian descent. Despite its low disease prevalence, CF exerts a potentially important economic impact on health care resources, and other social costs [8, 9] and has significant impact on patients’ health-related quality of life (HRQOL) [10,11,12]. The issue of total costs related to the treatment of CF and the HRQOL for CF patients is poorly understood. A number of recent studies have measured independently the economic and HRQOL impact on CF patients [8,9,10,11,12,13,14,15,16], a comprehensive study in the UK that examines all cost dimensions (direct medical, direct non-medical and indirect costs) and links cost with HRQOL is missing [17]
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