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Examining Trans-Provincial Diagnosis of Rare Diseases in China: The Importance of Healthcare Resource Distribution and Patient Mobility

Author

Listed:
  • Xiang Yan

    (Department of Urban Planning and Design, Faculty of Architecture, The University of Hong Kong, Pokfulam, Hong Kong, China
    Shenzhen Institute of Research and Innovation, The University of Hong Kong, Shenzhen 518057, China)

  • Dong Dong

    (JC School of Public Health and Primary Care, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China)

  • Shenjing He

    (Department of Urban Planning and Design, Faculty of Architecture, The University of Hong Kong, Pokfulam, Hong Kong, China
    Shenzhen Institute of Research and Innovation, The University of Hong Kong, Shenzhen 518057, China)

  • Chris Webster

    (Department of Urban Planning and Design, Faculty of Architecture, The University of Hong Kong, Pokfulam, Hong Kong, China
    Shenzhen Institute of Research and Innovation, The University of Hong Kong, Shenzhen 518057, China)

Abstract
(1) Background: Rare disease patients in China usually have to travel a long distance, typically across provinces, for an accurate diagnosis due to the uneven distribution of healthcare resources. This study investigated the impact factors of their trans-provincial diagnosis. (2) Methods: An analysis was made of 1531 cases (1032 adults and 499 children) garnered from the 2018 China Rare Disease Survey, representing a large patient community inflicted with 75 rare diseases from across 31 Chinese provinces. Logistic regression models were used for separate analysis of adult and child patient groups. (3) Results: Nearly half (47.2%) of patients obtained their accurate diagnosis outside their home provinces. The uneven geographical distribution of high-quality healthcare had a significant impact on variation in trans-province diagnosis. Adult patients with lower family income, rural hukou and severer physical disability were disadvantaged in accessing trans-provincial diagnosis. Families with a child patient tended to pour resources into obtaining the trans-provincial diagnosis. The rarity of the disease had only a minimal effect on healthcare utilization across the provinces. (4) Conclusions: In addition to medical care, more attention should be paid to the socioeconomic factors that prevent the timely diagnosis of a rare disease, especially the uneven geographical distribution of high-quality healthcare resources, the financial burden on the family and the differences between adult and child patients.

Suggested Citation

  • Xiang Yan & Dong Dong & Shenjing He & Chris Webster, 2020. "Examining Trans-Provincial Diagnosis of Rare Diseases in China: The Importance of Healthcare Resource Distribution and Patient Mobility," Sustainability, MDPI, vol. 12(13), pages 1-12, July.
    • Handle: RePEc:gam:jsusta:v:12:y:2020:i:13:p:5444-:d:380875
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    References listed on IDEAS

    as
    1. Wang, Chen & Wan, Guanghua, 2015. "Income polarization in China: Trends and changes," China Economic Review, Elsevier, vol. 36(C), pages 58-72.
    2. Silvia Balia & Rinaldo Brau & Emanuela Marrocu, 2018. "Interregional patient mobility in a decentralized healthcare system," Regional Studies, Taylor & Francis Journals, vol. 52(3), pages 388-402, March.
    3. Wan, Guanghua & Wang, Chen, 2015. "Income Polarization in the People’s Republic of China: Trends and Changes," ADBI Working Papers 538, Asian Development Bank Institute.
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    Cited by:

    1. Fengrui Jing & Lin Liu & Suhong Zhou & Guangwen Song, 2020. "Examining the Relationship between Hukou Status, Perceived Neighborhood Conditions, and Fear of Crime in Guangzhou, China," Sustainability, MDPI, vol. 12(22), pages 1-19, November.

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