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儿科炎症性肠病对照顾者工作生产力的影响:由 SEGHNP 进行的一项多中心研究。

Impact of pediatric inflammatory bowel disease on caregivers' work productivity: A multicenter study by the SEGHNP.

机构信息

Sección de Gastroenterología y Nutrición Pediátrica, Hospital Infantil Universitario Niño Jesús, Madrid, Spain.

Servicio de Gastroenterología, Hepatología y Nutrición Pediátrica, Hospital Sant Joan de Déu, Barcelona, Spain.

出版信息

J Pediatr Gastroenterol Nutr. 2024 Sep;79(3):573-582. doi: 10.1002/jpn3.12328. Epub 2024 Jul 28.

Abstract

OBJECTIVES/BACKGROUND: Pediatric inflammatory bowel disease (PIBD) poses significant challenges not only to patients but also to their families, particularly affecting the work productivity of caregivers. This Spanish multicenter study aims to elucidate the extent of this impact.

MATERIALS AND METHODS

A cross-sectional, multicenter study was conducted between February 2021 and June 2023, involving parents or caregivers of PIBD patients aged 10-18 years. The study utilized the Work Productivity and Activity Impairment (WPAI) questionnaires alongside assessing disease activity and socioeconomic status to quantify work productivity loss and its economic implications.

RESULTS

The study included 370 patients from 37 centers, highlighting a significant loss of work productivity among caregivers, especially mothers. The global unemployment rate was notably higher in this group compared to national averages (22.9% vs. 13.8%), particularly among females (30.7% vs. 13.7%), with absenteeism and presenteeism rates (26.4% and 39.9%) significantly impacting the caregivers' ability to work. The study also identified active disease and treatment with biologics or steroids as risk factors for increased work productivity loss.

CONCLUSIONS

Caregivers of children with inflammatory bowel disease face considerable challenges in maintaining employment, with a notable economic impact due to lost work hours. The findings underscore the need for targeted support and interventions to assist these families, suggesting potential areas for policy improvement and support mechanisms to mitigate the socioeconomic burden of PIBD on affected families.

摘要

目的/背景:小儿炎症性肠病(PIBD)不仅对患者,而且对其家庭,尤其是对照顾者的工作生产力都带来了重大挑战。这项西班牙多中心研究旨在阐明其影响的程度。

材料与方法

这是一项在 2021 年 2 月至 2023 年 6 月间进行的、涉及 10-18 岁 PIBD 患者的父母或照顾者的、横断面、多中心研究。研究采用工作生产效率和活动障碍(WPAI)问卷,同时评估疾病活动和社会经济状况,以量化工作生产效率损失及其经济影响。

结果

该研究纳入了来自 37 个中心的 370 名患者,突出了照顾者,特别是母亲,工作生产效率的显著损失。这组人群的全球失业率明显高于全国平均水平(22.9%比 13.8%),尤其是女性(30.7%比 13.7%),旷工和在职病假率(26.4%和 39.9%)显著影响了照顾者的工作能力。研究还发现,疾病活动和生物制剂或类固醇治疗是导致工作生产效率损失增加的风险因素。

结论

炎症性肠病患儿的照顾者在维持就业方面面临着巨大的挑战,由于工作时间的损失,对经济产生了重大影响。这些发现强调了需要为这些家庭提供有针对性的支持和干预措施,表明了政策改进和支持机制的潜在领域,以减轻 PIBD 对受影响家庭的社会经济负担。

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