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原发性免疫缺陷病(PID)在东南亚的生命指数:PID 护理原则(PoC)的比较分析。

Primary immunodeficiencies (PID) Life Index in Southeast Asia: A comparative analysis of PID Principles of Care (PoC).

机构信息

Department of Pediatric, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia.

Research Center, Hospital Tunku Ampuan Besar Tuanku Aishah Rohani, Universiti Kebangsaan Malaysia (UKM) Specialist Children's Hospital, Kuala Lumpur, Malaysia.

出版信息

Front Immunol. 2023 Mar 30;14:1151335. doi: 10.3389/fimmu.2023.1151335. eCollection 2023.

Abstract

OBJECTIVE

To analyze the implementation of the Principles of Care (PoC) in primary immunodeficiencies (PID) in Southeast Asia (SEA) countries - six years after its call of action.

METHODOLOGY

Using the newly developed PID Life Index software, the index of implementation of principles of care in the management of PIDs patients involving the six participating SEA countries (Cambodia, Indonesia, Malaysia, Vietnam, Thailand, and Philippines) were extracted. For each of the six separate principles, the index from the six countries will be compared and presented based on the calculated index.

RESULTS

Comparative analysis of the six principles of care of PID in the SEA countries showed low diagnostic rate with minimal availability of diagnostic tests options. Generally, almost all SEA countries provide curative treatments, vaccines, and anti-infectious therapies although the reimbursement scheme varied in relieving patients' financial burden. We also highlighted the active involvement of patient organizations in SEA, with main areas of work focused on advocacy and increasing awareness among public and healthcare professionals.

DISCUSSION AND CONCLUSION

It is applaudable that the SEA continent is gradually strengthening its work in management of PID, especially in Thailand and Vietnam. However, more emphasis must be placed among stakeholders in SEA countries towards successful implementation of the PoC for a holistic management of PID patients.

摘要

目的

分析东南亚(SEA)国家实施初级免疫缺陷(PID)护理原则(PoC)的情况 - 在行动呼吁六年后。

方法

使用新开发的 PID 生命指数软件,从参与的六个 SEA 国家(柬埔寨、印度尼西亚、马来西亚、越南、泰国和菲律宾)中提取了管理 PID 患者护理原则实施指数。对于六个单独的原则中的每一个,将根据计算出的指数比较和呈现来自六个国家的指数。

结果

对 SEA 国家 PID 护理的六个原则进行比较分析显示,诊断率较低,诊断测试选项有限。一般来说,虽然缓解患者经济负担的报销计划有所不同,但几乎所有 SEA 国家都提供了根治性治疗、疫苗和抗感染治疗。我们还强调了患者组织在 SEA 的积极参与,其主要工作领域集中在宣传和提高公众和医疗保健专业人员的认识上。

讨论和结论

值得称赞的是,SEA 大陆正在逐步加强其在 PID 管理方面的工作,特别是在泰国和越南。然而,SEA 国家的利益相关者必须更加重视成功实施 PoC,以全面管理 PID 患者。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0a8b/10097921/3dd8d6bf44bc/fimmu-14-1151335-g001.jpg

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