Hong Kong Med J 2026;32(Suppl 1):S24-8
Socio-economic burden and health-related quality of life in patients with rare diseases during the COVID-19 pandemic: abridged secondary publication
CCY Chung, WHS Wong, SL Lee, BHY Chung
Department of Paediatrics and Adolescent Medicine, School of Clinical Medicine, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China
 
 
  1. In Hong Kong, total costs for rare disease were estimated to be HK$518 420 per patient per year; >60% of costs were attributable to direct non-healthcare and indirect costs.
  2. In Hong Kong, health-related quality of life, in terms of utility score, was significantly lower in patients with rare disease than in patients with other chronic diseases (0.52 vs 0.87-0.88).
  3. Higher socio-economic costs for rare diseases were associated with lower utility scores, younger age, shorter duration since diagnosis, and receipt of governmental allowance.
  4. During the COVID-19 pandemic, patients and caregivers who reported changes in service or resource utilisation had significantly lower utility scores than those who reported no changes.