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西班牙小儿脑瘫的经济和社会负担:一项疾病成本研究。

The economic and social burden of pediatric cerebral palsy in Spain: a cost-of-illness study.

作者信息

Nova-Díaz Diana Marcela, Arana-Rivera Paloma, Sánchez-Iriso Eduardo, Aguilera-Albesa Sergio

机构信息

Department of Economics, Public University of Navarra, Paediatric Neurology Research Group, Navarrabiomed, Pamplona, Spain.

University Hospital of Navarra, Paediatric Neurology Research Group, Navarrabiomed, Pamplona, Spain.

出版信息

Front Public Health. 2025 Jul 23;13:1589114. doi: 10.3389/fpubh.2025.1589114. eCollection 2025.

DOI:10.3389/fpubh.2025.1589114
PMID:40771253
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12325214/
Abstract

BACKGROUND

Cerebral palsy (CP) is the leading cause of motor disability in children and a lifelong condition with no cure, imposing a significant economic burden on families and healthcare systems. However, the economic impact of pediatric CP remains underexplored in Spain, hindering the development of cost-effective policies. Cost-of-illness (COI) studies are essential to quantify disease burden and guide resource allocation. This study aims to classify and estimate the economic and social costs of pediatric CP in Spain from a societal perspective, considering healthcare, government, and family burdens. Additionally, it evaluates the caregiving burden experienced by primary caregivers.

METHODS

A bottom-up, disease-specific COI study was conducted from a societal perspective using data from a population-based epidemiological registry of CP. Data collection included structured questionnaires and administrative records from regional healthcare and government sources, covering a 1-year period. The Zarit Burden Interview was used to assess caregiver burden. The study captures direct, indirect, and out-of-pocket costs, including productivity losses associated with caregiving.

RESULTS

The study included 148 children with CP (mean age: 9.72) and their primary caregivers (66% female, mean age: 42.97 years). Medical care costs averaged €3,801 (3.72%), while out-of-pocket expenses totalled €7,041 (6.89%), largely driven by complementary and alternative therapies used by 64% of familie. Special education represented €8,932 (8.75%), whereas caregiver productivity losses were the largest component (€60,638; 59.37%). The mean annual societal cost per child was €102,135, over thirty times Spain's mean per capita healthcare expenditure. However, using a conservative assumption that valued the caregiver's time at the minimum wage, the social costs would be €70,190 per child. Children with severe motor impairment (GMFCS III-V) had nearly twice the cost of those with milder impairments (GMFCS I-II) (1.96; 95% CI: 1.92-2.01).

CONCLUSIONS

The economic burden of pediatric CP is largely driven by caregiving and non-medical costs, highlighting gaps in financial and social support. These findings call for targeted policies to reduce caregiver strain and enhance funding for assistive services, improving equity in CP care. Additionally, comprehensive cost-effectiveness analyses are needed to guide resource allocation and ensure sustainable support strategies.

摘要

背景

脑瘫是儿童运动残疾的主要原因,是一种无法治愈的终身疾病,给家庭和医疗系统带来了巨大的经济负担。然而,小儿脑瘫在西班牙的经济影响仍未得到充分研究,这阻碍了具有成本效益的政策的制定。疾病成本(COI)研究对于量化疾病负担和指导资源分配至关重要。本研究旨在从社会角度对西班牙小儿脑瘫的经济和社会成本进行分类和估计,同时考虑医疗保健、政府和家庭负担。此外,它还评估了主要照顾者所经历的照顾负担。

方法

从社会角度进行了一项自下而上的、针对特定疾病的COI研究,使用了基于人群的脑瘫流行病学登记数据。数据收集包括结构化问卷以及来自地区医疗保健和政府部门的行政记录,涵盖一年时间。使用 Zarit 负担访谈来评估照顾者负担。该研究涵盖了直接、间接和自付费用,包括与照顾相关的生产力损失。

结果

该研究纳入了148名脑瘫儿童(平均年龄:9.72岁)及其主要照顾者(66%为女性,平均年龄:42.97岁)。医疗费用平均为3801欧元(3.72%),而自付费用总计7041欧元(6.89%),这在很大程度上是由64%的家庭使用的补充和替代疗法所驱动。特殊教育费用为8932欧元(8.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a842/12325214/23e92fd2d373/fpubh-13-1589114-g0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a842/12325214/ebde800ae55e/fpubh-13-1589114-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a842/12325214/23e92fd2d373/fpubh-13-1589114-g0002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a842/12325214/ebde800ae55e/fpubh-13-1589114-g0001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a842/12325214/23e92fd2d373/fpubh-13-1589114-g0002.jpg

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