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伊朗囊性纤维化的社会经济负担:一项疾病成本研究。

Societal Economic Burden of Cystic Fibrosis in Iran: A Cost-of-Illness Study.

作者信息

Karami Hassan, Rafati Shideh, Shirvani Shiri Maryam, Mouseli Ali, Salari Hedayat, Ghanbarnejad Amin, Nowrouzpour Mitra, Noroozian Fatemeh, Alizadeh Ali, Asadi Fatemeh, Salehi Narges

机构信息

Social Determinants in Health Promotion Research Center, Hormozgan Health Institute, Hormozgan University of Medical Sciences, Bandar Abbas, Iran.

Department of Health Services Management, School of Health, Hormozgan University of Medical Sciences, Bandar Abbas, Iran.

出版信息

J Health Econ Outcomes Res. 2025 Sep 9;12(2):116-123. doi: 10.36469/001c.143266. eCollection 2025.

DOI:10.36469/001c.143266
PMID:40950753
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12425157/
Abstract

BACKGROUND

Cystic fibrosis (CF) is a rare genetic disorder that places a substantial financial burden on patients, families, and the healthcare system. This study aimed to estimate the economic impact of CF in southern Iran.

METHODS

A cross-sectional, prevalence-based cost-of-illness study was conducted from a societal perspective, using a bottom-up approach and the human capital method. Data were collected through insurance records and a standardized cost questionnaire. Mean annual per-patient costs were calculated, and cost determinants were analyzed using the Mann-Whitney and Kruskal-Wallis tests.

RESULTS

The average annual cost per CF patient was US $4070, with 67% attributed to direct medical costs, 20% to direct nonmedical costs, and 13% to indirect costs. Higher total costs were significantly associated with disease severity, hospitalization history, and absence of supplementary insurance.

CONCLUSION

CF imposes a considerable economic burden in Iran, predominantly driven by drug and hospitalization expenses. Direct nonmedical costs and indirect costs also contribute meaningfully. These findings highlight the need for improved access to specialized CF care, enhanced insurance coverage, and stronger support for informal caregivers to alleviate the financial pressure on affected families.

摘要

背景

囊性纤维化(CF)是一种罕见的遗传性疾病,给患者、家庭和医疗保健系统带来了沉重的经济负担。本研究旨在评估CF在伊朗南部造成的经济影响。

方法

采用自下而上的方法和人力资本法,从社会角度开展了一项基于患病率的横断面疾病成本研究。通过保险记录和标准化成本问卷收集数据。计算了每位患者的年均成本,并使用曼-惠特尼检验和克鲁斯卡尔-沃利斯检验分析了成本决定因素。

结果

每位CF患者的年均成本为4070美元,其中67%归因于直接医疗成本,20%归因于直接非医疗成本,13%归因于间接成本。总成本较高与疾病严重程度、住院史以及没有补充保险显著相关。

结论

CF在伊朗造成了相当大的经济负担,主要由药物和住院费用驱动。直接非医疗成本和间接成本也有很大贡献。这些发现凸显了改善获得CF专科护理的机会、加强保险覆盖范围以及为非正式护理人员提供更有力支持以减轻受影响家庭经济压力的必要性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1eee/12425157/f83d1fdbd7df/jheor_2025_12_2_143266_300782.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1eee/12425157/f76607bbaecc/jheor_2025_12_2_143266_300781.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1eee/12425157/f83d1fdbd7df/jheor_2025_12_2_143266_300782.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1eee/12425157/f76607bbaecc/jheor_2025_12_2_143266_300781.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1eee/12425157/f83d1fdbd7df/jheor_2025_12_2_143266_300782.jpg

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本文引用的文献

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Socioeconomic burden of cystic fibrosis in Canada.加拿大囊性纤维化的社会经济负担。
BMJ Open Respir Res. 2024 Aug 9;11(1):e002309. doi: 10.1136/bmjresp-2024-002309.
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International disparities in diagnosis and treatment access for cystic fibrosis.
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Pediatr Pulmonol. 2024 Jun;59(6):1622-1630. doi: 10.1002/ppul.26954. Epub 2024 Apr 1.
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Measuring the burden of cystic fibrosis: A scoping review.测量囊性纤维化负担:范围综述。
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Morbidity and treatment costs of cystic fibrosis in a middle-income country.一个中等收入国家囊性纤维化的发病率和治疗成本。
Singapore Med J. 2023 Sep 19. doi: 10.4103/singaporemedj.SMJ-2022-093.
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Cystic Fibrosis.囊性纤维化。
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