This paper is in the following e-collection/theme issue:

Cross-Sectional Studies in Public Health (431) Prevention and Health Promotion (1362) Health Care Quality and Health Services Research (337) Electronic/Mobile Data Capture, Internet-based Survey & Research Methodology (997)

Published on in Vol 9 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/50147, first published .
Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey

Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey

Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey

Authors of this article:

Richard Huan Xu1 Author Orcid Image ;   Shamay S M Ng1 Author Orcid Image ;   Nan Luo2 Author Orcid Image ;   Dong Dong3, 4 Author Orcid Image ;   Shuyang Zhang5 Author Orcid Image
Article Authors Cited by (13) Tweetations (2) Metrics

Journals

  1. Shi Y, Wang B, Zhao J, Wang C, Li N, Chen M, Wan X. Summary Measure of Health-Related Quality of Life and Its Related Factors Based on the Chinese Version of the Core Healthy Days Measures: Cross-Sectional Study. JMIR Public Health and Surveillance 2024;10:e52019 View
  2. Yu J, Chen S, Zhang H, Zhang S, Dong D. Patterns of the Health and Economic Burden of 33 Rare Diseases in China: Nationwide Web-Based Study. JMIR Public Health and Surveillance 2024;10:e57353 View
  3. Duan X, Zhu Y, Zheng S, Song Y, Wang W, Chen D, Zhao Z, Pan Y, Chen Z, Zhang T, Huang Y, Ren L, Ma D, Wang W, Huang S, Song Q, Wang B, Zheng Y, Li J, Wang J, Zhang Y, Guo X, Ruan W, Wang J, Gong Z, Chang X, Yuan Z, Wang F, Tian G, Meng J, Bao Z, Li L. Spectrum of Craniofacial and Oral Malformations in China, a Multicenter Study. Oral Diseases 2025;31(4):1245 View
  4. Xu R, Rencz F, Sun R, Dong D, Zhang S. Development and Testing of the Psychometric Properties of 20 Bolt-On Items for the EQ-5D-5L Across 31 Rare Diseases. Value in Health 2025;28(5):769 View
  5. Dai S, Zheng J, Chen Y, Zhu J, Wang X, Peng Y, Luo Y, Lin T, Li Y, Ma M, Shi Z, Meng X, Sun L, Zhou J. A cross-sectional survey on the health status of patients with Charcot–Marie–Tooth disease in a Chinese national patient group. Journal of Neurology 2025;272(5) View
  6. Wang W, He J, Ma X, Hu Z, Gao B, Du J, Qiao H. Unveiling the long-term impact: exploring the link between exposure to the great Chinese famine and health-related quality of life in middle-aged and elderly populations through propensity score matching. BMC Public Health 2025;25(1) View
  7. Morán M, Monsalve A, Fontanil Y, Bacherini A, Balboni G, Gómez L. Quality of life outcomes and predictors for youth with intellectual disability and rare diseases. Research in Developmental Disabilities 2025;164:105071 View
  8. Song X, Qiao X, Jia Y, Li H, Wang P, Hu M. Health-related quality of life of patients with multiple sclerosis in China: a national online survey. Health and Quality of Life Outcomes 2025;23(1) View
  9. Xie H, Zhang Q, Jin R, He J, Hu X, Zhang Y, Shao X, Li X, Zhai H, Chang F. Psychometric Validation of EQ-5D-5L in Individuals With Chronic Spinal Cord Injury in China. Value in Health Regional Issues 2025;50:101164 View
  10. Tang M, Ye Z, Zhang X, He J, Kang Q, Tang Z, Wang L, Yang Y, Yang Y, Hu S. Quality of life and its contributors among patients with homozygous familial hypercholesterolemia in China. Frontiers in Public Health 2025;13 View
  11. Xu X, He X, Wu W, Xin Y, Li Q, Song L, Li K, Wu J. Assessing the economic burden and health-related quality of life in chinese patients with fibrodysplasia ossificans progressiva: a questionnaire survey analysis. Orphanet Journal of Rare Diseases 2025;20(1) View
  12. Yu J, Zhang H, Chen S, Xu R, Zhang S, Dong D. Health-related Quality of Life among Children Living with Rare Diseases in China: a Nationwide Study. Applied Research in Quality of Life 2025 View
  13. Yu J, Zhang H, Chen S, Xu R, Zhang S, Dong D. Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study. BMC Public Health 2025;25(1) View