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

TitleExamining Trans-Provincial Diagnosis of Rare Diseases in China: The Importance of Healthcare Resource Distribution and Patient Mobility
Authors
Keywordsrare disease
diagnosis
access to healthcare
patient mobility
China
Issue Date2020
PublisherMDPI. The Journal's web site is located at http://www.mdpi.com/journal/sustainability
Citation
Sustainability, 2020, v. 12 n. 13, p. article no. 5444 How to Cite?
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.
Persistent Identifierhttp://hdl.handle.net/10722/287254
ISSN
2023 Impact Factor: 3.3
2023 SCImago Journal Rankings: 0.672
ISI Accession Number ID

 

DC FieldValueLanguage
dc.contributor.authorYAN, X-
dc.contributor.authorDONG, D-
dc.contributor.authorHe, S-
dc.contributor.authorWebster, CJ-
dc.date.accessioned2020-09-22T02:58:11Z-
dc.date.available2020-09-22T02:58:11Z-
dc.date.issued2020-
dc.identifier.citationSustainability, 2020, v. 12 n. 13, p. article no. 5444-
dc.identifier.issn2071-1050-
dc.identifier.urihttp://hdl.handle.net/10722/287254-
dc.description.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.-
dc.languageeng-
dc.publisherMDPI. The Journal's web site is located at http://www.mdpi.com/journal/sustainability-
dc.relation.ispartofSustainability-
dc.rightsThis work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.-
dc.subjectrare disease-
dc.subjectdiagnosis-
dc.subjectaccess to healthcare-
dc.subjectpatient mobility-
dc.subjectChina-
dc.titleExamining Trans-Provincial Diagnosis of Rare Diseases in China: The Importance of Healthcare Resource Distribution and Patient Mobility-
dc.typeArticle-
dc.identifier.emailHe, S: sjhe@hku.hk-
dc.identifier.emailWebster, CJ: cwebster@hku.hk-
dc.identifier.authorityHe, S=rp01996-
dc.identifier.authorityWebster, CJ=rp01747-
dc.description.naturepublished_or_final_version-
dc.identifier.doi10.3390/su12135444-
dc.identifier.scopuseid_2-s2.0-85088040868-
dc.identifier.hkuros314326-
dc.identifier.volume12-
dc.identifier.issue13-
dc.identifier.spagearticle no. 5444-
dc.identifier.epagearticle no. 5444-
dc.identifier.isiWOS:000550233800001-
dc.publisher.placeBasel, Switzerland-
dc.identifier.issnl2071-1050-

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