1. Current Perspectives and Unmet Needs of Primary Immunodeficiency Care in Asia Pacific.
- Author
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Leung D, Chua GT, Mondragon AV, Zhong Y, Nguyen-Ngoc-Quynh L, Imai K, Vignesh P, Suratannon N, Mao H, Lee WI, Kim YJ, Chan GCF, Liew WK, Huong LTM, Kanegane H, Muktiarti D, Zhao X, Santos-Ocampo FJ, Latiff AHA, Seger R, Ochs HD, Singh S, Lee PP, and Lau YL
- Subjects
- Asia epidemiology, Disease Management, Disease Susceptibility, Genetic Testing, Geography, Medical, Health Resources, Humans, Immunologic Deficiency Syndromes diagnosis, Immunologic Deficiency Syndromes etiology, Immunologic Deficiency Syndromes therapy, Public Health Surveillance, Delivery of Health Care, Health Services Needs and Demand, Immunologic Deficiency Syndromes epidemiology, Primary Health Care
- Abstract
Background: The Asia Pacific Society for Immunodeficiencies (APSID) conducted nine primary immunodeficiency (PID) Schools in 5 years since inauguration to provide PID care training for early career physicians in Asia Pacific, a region with divergent needs in PID resources and training. Objective: To identify differences in PID patient care resource and training needs across Asia Pacific and propose a corresponding action plan. Methods: The Human Development Index (HDI) indicates the degree of socio-economic development in each country/region. Information related to investigations and learning issues were extracted from the abstracts and personal statements from all Schools and mapped onto resource and training needs. Correlations between HDI and country/region-specific parameters were tested by two-tailed Pearson correlation. Results: A total of 427 abstracts were received in nine Schools between 2015 and 2020, predominantly on immunodeficiencies affecting cellular and humoral immunity. Genetic confirmation was described in 61.8% of abstracts, and its absence negatively correlated with HDI ( r = -0.696, p = 0.004). Essential immunologic and genetic tests were not available in 25.4 and 29.5% of abstracts, respectively, and their absence negatively correlated with HDI ( r = -0.788, p < 0.001; r = -0.739, p = 0.002). HDI positively correlated with average testing level ( r = 0.742, p = 0.002). Cases from medium-HDI countries/regions focused on learning how to investigate a patient for PIDs in cases of severe or atypical infections, whereas those from very-high-HDI countries/regions, from which most faculty members originated, listed hematopoietic stem cell transplantation and gene therapy, newborn screening, and research as learning issues more frequently. Conclusion: There are unique HDI-related PID resource and training needs in each country/region. APSID proposes HDI group-specific strategies to improve PID care and education in her member countries/regions. Further quantitative analysis of needs in PID care in Asia Pacific is needed for lobbying governments to increase their support for PID care and research., (Copyright © 2020 Leung, Chua, Mondragon, Zhong, Nguyen-Ngoc-Quynh, Imai, Vignesh, Suratannon, Mao, Lee, Kim, Chan, Liew, Huong, Kanegane, Muktiarti, Zhao, Santos-Ocampo, Latiff, Seger, Ochs, Singh, Lee and Lau.)
- Published
- 2020
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