Evaluating the Health-Related Quality of Life of the Rare Disease Population in Hong Kong Using EQ-5D 3-Level

Sep 1, 2022, 00:00
10.1016/j.jval.2022.04.1725
https://www.valueinhealthjournal.com/article/S1098-3015(22)01927-1/fulltext
Title : Evaluating the Health-Related Quality of Life of the Rare Disease Population in Hong Kong Using EQ-5D 3-Level
Citation : https://www.valueinhealthjournal.com/action/showCitFormats?pii=S1098-3015(22)01927-1&doi=10.1016/j.jval.2022.04.1725
First page : 1624
Section Title : PREFERENCE-BASED ASSESSMENTS
Open access? : Yes
Section Order : 18

Objectives

This study aimed to establish a normative profile of health-related quality of life (HRQOL) of the rare disease (RD) population in Hong Kong (HK) and identify potential predictors.

Methods

Between March 2020 and October 2020, patients with RD and caregivers were recruited through Rare Disease Hong Kong, the largest RD patient group alliance in HK. HRQOL was derived using the EQ-5D 3-Level with reference to the established HK value set. Utility scores were stratified according to demographics and disease-related information. Multiple linear regression was performed to explore the associations between patient characteristics and HRQOL.

Results

A total of 286 patients, covering 107 unique RDs, reported a mean utility score of 0.53 (SD 0.36). Thirty patients (10.5%) reported negative utility scores, indicating worse-than-death health states. More problems were recorded in the “usual activities” and “self-care” dimensions. Univariate analyses revealed that neurologic diseases, high out-of-pocket expenditure, home modification, and living in public housing or subdivided flats/units were significantly associated with lower HRQOL. A total of 99 caregivers reported a mean utility score of 0.78 (SD 0.17), which was significantly associated with the utility score of patients they took care of (r = 0.32; P = .001).

Conclusions

The normative profile of the RD population was established, which revealed lower HRQOL in the RD population than other chronic disease groups and general population in HK. Findings were corroborated by evidence from other cohorts using EQ-5D, combined as part of a meta-analysis. Identifying predictors highlight areas that should be prioritized to improve HRQOL of RD population through clinical and psychosocial dimensions.

Categories :
  • Health State Utilities
  • Patient-Centered Research
  • Patient-reported Outcomes & Quality of Life Outcomes
  • Prospective Observational Studies
  • Rare & Orphan Diseases
  • Specific Diseases & Conditions
  • Study Approaches
Tags :
  • EQ-5D
  • health-related quality of life
  • rare disease caregivers
  • rare disease patients
  • rare diseases
  • utility score
Regions :
  • Asia Pacific (including Oceania)
ViH Article Tags :