Publications

Our lab actively disseminates research findings through peer-reviewed publications and books. Explore our contributions below, organized by year.

Journal Articles

2024

  • Xu, R. H., Dai, Y., Ng, S. S. M., Tsang, H. W. H., Zhang, S., Dong, D. (2024). Assessing validity of the EQ-5D-5L proxy in children and adolescents with Duchenne muscular dystrophy or spinal muscular atrophy. The European Journal of Health Economics, 25(1), 103–115. https://doi.org/10.1007/s10198-023-01635-3
  • Huang, S., Li, X., & Dong, D. (2024). Negotiating work and care in Chinese families of children with autism: Reframing mothers' narratives through a social-relational lens. Disability & Society, 39(11), 2835–2856. https://doi.org/10.1080/09687599.2024.2324629
  • Chen, S., Zhang, H., Yu, J., Cao, X., Zhang, S., & Dong, D. (2024). Economic burden of Huntington's Disease in China: Results from a National-Wide Cross-Sectional Study. Neuroepidemiology, 58(1), 31-36. https://doi.org/10.1159/000535881
  • Xu, R. H., Luo, N., & Dong, D. (2024). Measurement properties of the EQ-5D-3L, EQ-5D-5L, and SF-6Dv2 in patients with late-onset Pompe disease. The European Journal of Health Economics. Advance online publication. https://doi.org/10.1007/s10198-024-01744-7
  • Yu, J., Xie, L., Chen, S., Fang, Z., Zhu, L., Zhang, H., Xu, R. H., Yang, H., & Dong, D. (2024). Social support and medication adherence among adult myasthenia gravis patients in China: The mediating role of mental health and self-efficacy. Orphanet Journal of Rare Diseases, 19(1), 143. https://doi.org/10.1186/s13023-024-03169-8
  • Chen, S., Zhang, H., Yu, J., Cao, X., Zhang, S., & Dong, D. (2024). Sex-Specific Differences in the Progression of Huntington's Disease Symptoms: A National Study in China. Neuroepidemiology. Advance online publication. https://doi.org/10.1159/000542886
  • Xu, R. H., Zhao, Z., Mao, Z., Wang, S., Xiong, H., & Dong, D. (2024). Measurement properties of the EQ-5D-Y-3L, PedsQL 4.0, and PROMIS-25 Profile v2. 0 in pediatric patients with spinal muscular atrophy. Health and Quality of Life Outcomes, 22(1), 50. https://doi.org/10.1186/s12955-024-02215-0
  • Yu, J., Chen, S., Zhang, H., Zhang, S., & Dong, D. (2024). Patterns of the health and economic burden of 33 rare diseases in China: Nationwide web-based study. JMIR Public Health and Surveillance, 10(1), e57353. https://doi.org/10.2196/57353
  • Zhang, H., Chen, S., Xu, R. H., Yu, S., Yu, J., & Dong, D. (2024). Association between under-dose of enzyme replacement therapy and quality of life in adults with late-onset Pompe disease in China: A retrospective matched cohort study. PLoS ONE, 19(9), e0310534. https://doi.org/10.1371/journal.pone.0310534
  • Xu, R. H., Zhao, Z., Pan, T., Monteiro, A., Gu, H., & Dong, D. (2024). Comparing the measurement properties of the EQ-5D-5 L, SF-6Dv2, QLU-C10D and FACT-8D among survivors of classical Hodgkin's lymphoma. The European Journal of Health Economics. Advance online publication. https://doi.org/10.1007/s10198-024-01775-0

2023

  • Xu, R. H., Yu, S., Liu, J., Zhang, S., & Dong, D. (2023). Developing the health state classification system for a condition-specific preference-based measure for patients with myasthenia gravis. Disability and Rehabilitation, 45(20), 3366–3372. https://doi.org/10.1080/09638288.2022.2132470
  • Xu, R. H., Lu, M., Zhang, S., & Dong, D. (2023). EQ-5D and SF-6D health utility scores in patients with spinal and bulbar muscular atrophy. The European Journal of Health Economics, 24(8), 1399–1410. https://doi.org/10.1007/s10198-023-01584-6
  • Zheng, Z., Feng, Z., Zhang, D., Sun, X., Dong, D., Luo, Y., & Feng, D. (2023). Does self-medication reduce medical expenditure among the middle-aged and elderly population? A four-wave longitudinal study in China. Frontiers in Public Health, 10, 1047710. https://doi.org/10.3389/fpubh.2022.1047710
  • Fang, Z., Liu, G., Zhu, L., & Dong, D. (2023). Doing "gendered exit": Work, care and the moral practices of disabled persons. Gender, Work & Organization, 30(5), 1571–1584. https://doi.org/10.1111/gwao.12985
  • Xu, R. H., Dai, Y., Ng, S. S. M., Zhang, S., & Dong, D. (2023). Health-related quality of life in children and adolescents with Duchenne muscular dystrophy and comorbid attention-deficit hyperactivity disorder using propensity-score matching. Journal of Affective Disorders, 333, 147–153. https://doi.org/10.1016/j.jad.2023.03.057
  • Oerlemans, S., Efficace, F., Kyriakou, C., Freitas, A. C., Shamieh, O., Creutzberg, C. L., Lehmann, J., Petranovic, D., Nagele, E., & Bredart, A. (2023). International validation of two EORTC questionnaires for assessment of health‐related quality of life for patients with high‐grade non‐Hodgkin lymphoma (QLQ‐NHL‐HG29) and low‐grade non‐Hodgkin lymphoma (QLQ‐NHL‐LG20). Cancer, 129(17), 2727-2740. https://doi.org/10.1002/cncr.34778
  • Dong, D., Xiong, S., Nichini, E., Chen, X., Liu, B., Zhu, L., Yip, F. F., Sun, L., & Zhu, J. (2023). Applying and assessing the PEERS model on genetic counseling training in China: A mixed-method approach. Frontiers in Medicine, 9, 986851. https://doi.org/10.3389/fmed.2022.986851
  • Xu, R. H., Zhu, L., Sun, R., Zou, S., & Dong, D. (2023). Impact of caregiver's eHealth literacy, financial well-being, and mental health on quality of life of pediatric patients with osteogenesis imperfecta. Health and Quality of Life Outcomes, 21(1), 67. https://doi.org/10.1186/s12955-023-02159-1
  • Oerlemans, S., Efficace, F., Shamieh, O., Cardoso Borges, F., de Jong, C., Dong, D., Lehmann, J., Malak, S., Petranovic, D., & Scholz, C. W. (2023). International validation of a health-related quality-of-life questionnaire for Hodgkin lymphoma: The EORTC QLQ-HL27. Blood Advances, 7(22), 7045-7055. https://doi.org/10.1182/bloodadvances.2023010058
  • Barnett, C., Alzahmi, F., Dong, D., Heckman, J., Salutto, V., & Shin, H. Y. (2023). Challenges managing myasthenia gravis: An international perspective. RRNMF Neuromuscular Journal, 4(3). https://doi.org/10.47843/rrnmf.2023.v4i3.331
  • Xu, R. H., Ng, S. S. M., Luo, N., Dong, D., & Zhang, S. (2023). Measurement of Health-Related Quality of Life in Individuals With Rare Diseases in China: Nation-Wide Online Survey. JMIR Public Health and Surveillance, 9(1), e50147. https://doi.org/10.2196/50147
  • Xu, R. H., Ma, B., Xin, H., Zhang, H., Zeng, Y., Luo, N., & Dong, D. (2023). Measurement properties of the EQ-5D-5L and PROPr in patients with spinal muscular atrophy. Health and Quality of Life Outcomes, 21(1), 123. https://doi.org/10.1186/s12955-023-02188-w

2022

  • Xu, R. H., Dong, D., Luo, N., Wong, E. L.-Y., Yang, R., Liu, J., Yuan, H., & Zhang, S. (2022). Mapping the Haem-A-QoL to the EQ-5D-5L in patients with hemophilia. Quality of Life Research, 31(5), 1533–1544. https://doi.org/10.1007/s11136-021-03049-y
  • Zhang, H., Xiao, Y., Zhao, X., Tian, Z., Zhang, S., & Dong, D. (2022). Physicians' knowledge on specific rare diseases and its associated factors: A national cross-sectional study from China. Orphanet Journal of Rare Diseases, 17(1), 120. https://doi.org/10.1186/s13023-022-02265-5
  • Xu, R. H., Yu, S., Yang, Y., Ng, S., Xu, B., & Dong, D. (2022). Psychometric evaluation of the Fear of Cancer Recurrence Inventory (FCRI) and development of a short version in patients with follicular lymphoma. Disability and Rehabilitation, 44(24), 7508–7515. https://doi.org/10.1080/09638288.2021.1972924
  • Xu, R. H., & Dong, D. (2022). Patient–Proxy Agreement Regarding Health-Related Quality of Life in Survivors with Lymphoma: A Propensity-Score Matching Analysis. Cancers, 14(3), 607. https://doi.org/10.3390/cancers14030607
  • Chen, S., Wang, Y., Zhu, L., Feng, Z., Gong, S., & Dong, D. (2022). Social activity as mediator between social support and psychological quality of life among people with rare diseases: A national repetitive cross-sectional study. Journal of Psychiatric Research, 150, 147–152. https://doi.org/10.1016/j.jpsychires.2022.04.026
  • Chen, S., Wang, Y., Zhu, L., Gan, Y., & Dong, D. (2022). Factors associated with the psychological quality of life among adolescents with rare diseases in China: a national repetitive cross-sectional study. Social Psychiatry and Psychiatric Epidemiology, 57(8), 1723–1726. https://doi.org/10.1007/s00127-022-02249-3
  • Xu, R. H., Zhu, L., Sun, R., Tan, R. L.-Y., Luo, N., Zou, S., & Dong, D. (2022). Investigating the psychometric properties of the EQ-5D-Y-3L, EQ-5D-Y-5L, CHU-9D, and PedsQL in children and adolescents with osteogenesis imperfecta. European Journal of Pediatrics, 181(12), 4049–4058. https://doi.org/10.1007/s00431-022-04588-8
  • Chen, S., & Dong, D. (2022). Improving insurance protection for rare diseases: Economic burden and policy effects—simulation of people with Pompe disease in China. International Journal of Health Policy and Management, 12, 6282. https://doi.org/10.34172/ijhpm.2022.6282
  • Zhang, H., Chen, S., & Dong, D. (2022). Association of migration status with quality of life among rural and urban adults with rare diseases: A cross-sectional study from China. Frontiers in Public Health, 10, 1030828. https://doi.org/10.3389/fpubh.2022.1030828

2021

  • Xu, R. H., Wong, E. L.-y., Jin, J., Huang, H., & Dong, D. (2021). Health-related quality of life measured using EQ-5D in patients with lymphomas. Supportive Care in Cancer, 29(5), 2549–2560. https://doi.org/10.1007/s00520-020-05810-7
  • Guo, X., Wang, K., Yu, S., Gao, L., Wang, Z., Zhu, H., Xing, B., Zhang, S., & Dong, D. (2021). Quality of life and its determinants in patients with treated acromegaly: A cross-sectional nationwide study in China. The Journal of Clinical Endocrinology & Metabolism, 106(1), 211-225. https://doi.org/10.1210/clinem/dgaa780
  • Yang, S., Dong, D., Gu, H., Gale, R. P., Ma, J., & Huang, X. (2021). Impact of stopping therapy during the SARS-CoV-2 pandemic in persons with lymphoma. Journal of Cancer Research and Clinical Oncology, 147(5), 1469-1479. https://doi.org/10.1007/s00432-021-03596-5
  • Dong, D., Ahmed, S., Nichini, E., Yi, H., Jafri, H., Rashid, Y., Ahmed, M., & Zhu, J. (2021). Decision making on antenatal screening results: A comparative Q‐method study of women from two Chinese cities. Health Expectations, 24(2), 363-376. https://doi.org/10.1111/hex.13174
  • Dong, D., & Zhu, J. (2021). Patient advocacy, news coverage, and policy change: Constructing hepatitis B as a social problem in China's newspapers. Critical Public Health, 31(2), 193-203. https://doi.org/10.1080/09581596.2019.1677031

2020

  • Dong, D., Jin, J., Oerlemans, S., Yu, S., Yang, S., Zhu, J., & Xu, R. H. (2020). Validation of the Chinese EORTC chronic lymphocytic leukaemia module–application of classical test theory and item response theory. Health and Quality of Life Outcomes, 18(1), 13. https://doi.org/10.1186/s12955-019-1251-4
  • Dong, D., Chung, R. Y.-N., Chan, R. H. W., Gong, S., & Xu, R. H. (2020). Why is misdiagnosis more likely among some people with rare diseases than others? Insights from a population-based cross-sectional study in China. Orphanet Journal of Rare Diseases, 15(1), 334. https://doi.org/10.1186/s13023-020-01622-2
  • Yan, X., Dong, D., He, S., & Webster, C. (2020). Examining trans-provincial diagnosis of rare diseases in China: The importance of healthcare resource distribution and patient mobility. Sustainability, 12(13), 5444. https://doi.org/10.3390/su12135444
  • Dong, D., Chong, M. K.-c., Wu, Y., Kaminski, H., Cutter, G., Xu, X., Li, H., Zhao, C., Yin, J., & Yu, S. (2020). Gender differences in quality of life among patients with myasthenia gravis in China. Health and Quality of Life Outcomes, 18(1), 13. https://doi.org/10.1186/s12955-019-1250-5

Books

2024

  • Yan Chuanzhu, Zhao Kun, and Zhao Chongbo (Chief Editors), Hu Xin and Dong Dong (Associate Editors), Rare Disease Prevention, Treatment, and Protection in China: Myasthenia Gravis, Beijing: People’s Medical Publishing House, (2024). (in Chinese).《重症肌无力社会关爱组织发展》，焉传祝、赵琨、赵重波主编，胡欣、董咚副主编，《中国罕见病防治与保障——重症肌无力》，北京：人民卫生出版社

2020

  • Zhang Shuyang and Dong Dong. 2020 General Social Survey of Rare Diseases in China. Beijing: People’s Medical Publishing House, 2020. (in Chinese)张抒扬，董咚（主编），李林康、王奕鸥（副主编）. 2020中国罕见病综合社会调研。人民卫生出版社。2020年10月第1版

Conferences

More than 50 keynote speeches and presentations on rare disease research have been invited to give, and more than 40 papers from relevant international conferences have been published.

Selected conference papers

  • Contestations of Reproductive Sciences and Traditional Beliefs in Preimplantation Genetic Testing: An Ethnographic Study in Northwest China, the EASST-4S 2024 conference（国际科学社会研究学会4S年会，主题“实现和实施变革”）
  • The Separation of “Procreation” and “Parenting”: The Deconstruction and Reconstruction of Masculinity in Artificial Insemination by Donor (AID)，2025 塑造未来：实践东亚人类学会议