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Socio-economic costs of rare diseases and the risk of financial hardship: a cross-sectional study

Author

Listed:
  • Chung, Claudia C.Y.
  • Ng, Nicole Y.T.
  • Ng, Yvette N.C.
  • Lui, Adrian C.Y.
  • Fung, Jasmine L.F.
  • Chan, Marcus C.Y.
  • Wong, Wilfred H.S.
  • Lee, So Lun
  • Knapp, Martin
  • Chung, Brian H.Y.

Abstract

Background: To achieve universal healthcare coverage (UHC), the rare disease (RD) population must also receive quality healthcare without financial hardship. This study evaluates the impact of RDs in Hong Kong (HK) by estimating cost from a societal perspective and investigating related risk of financial hardship. Methods: A total of 284 RD patients and caregivers covering 106 RDs were recruited through HK's largest RD patient group, Rare Disease Hong Kong, in 2020. Resource use data were collected using the Client Service Receipt Inventory for Rare disease population (CSRI-Ra). Costs were estimated using a prevalence-based, bottom-up approach. Risk of financial hardship was estimated using catastrophic health expenditure (CHE) and impoverishing health expenditure (IHE) indicators. Multivariate regression was performed to identify potential determinants. Findings: Annual total RD costs in HK were estimated at HK$484,256/patient (United States (US) $62,084). Direct non-healthcare cost (HK$193,555/US$24,814) was the highest cost type, followed by direct healthcare (HK$187,166/US$23,995), and indirect (HK$103,535/US$13,273) costs. CHE at the 10% threshold was estimated at 36.3% and IHE at the $3.1 poverty line was 8.8%, both significantly higher than global estimates. Pediatric patients reported higher costs than adult patients (p

Suggested Citation

  • Chung, Claudia C.Y. & Ng, Nicole Y.T. & Ng, Yvette N.C. & Lui, Adrian C.Y. & Fung, Jasmine L.F. & Chan, Marcus C.Y. & Wong, Wilfred H.S. & Lee, So Lun & Knapp, Martin & Chung, Brian H.Y., 2023. "Socio-economic costs of rare diseases and the risk of financial hardship: a cross-sectional study," LSE Research Online Documents on Economics 118418, London School of Economics and Political Science, LSE Library.
    • Handle: RePEc:ehl:lserod:118418
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    More about this item

    Keywords

    rare disease; societal cost; socio-economic burden;
    All these keywords.

    JEL classification:

    • J1 - Labor and Demographic Economics - - Demographic Economics

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