Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study.

IF 2.4 Q2 HEALTH CARE SCIENCES & SERVICES

Journal of Patient-Reported Outcomes Pub Date : 2024-09-26 DOI:10.1186/s41687-024-00784-y

Martin Besser, Sian Bissell O'Sullivan, Siobhan Bourke, Louise Longworth, Giovanna Tedesco Barcelos, Yemi Oluboyede

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引用次数: 0

Abstract

Background: Sickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.

Methods: Validated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.

Results: Sixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.

Conclusion: Caring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.

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英国和法国镰状细胞病患者照顾者的经济负担和生活质量：一项横断面研究。

背景：镰状细胞病（SCD）是一种遗传性血液疾病，会影响红细胞和向身体组织输送氧气，其特征是溶血性贫血、疼痛发作、疲劳以及急性和慢性内脏器官损伤。照顾 SCD 患者给非正规护理人员带来了沉重的负担。本研究旨在了解护理 SCD 患者对其健康相关生活质量（HRQoL）和经济负担的影响：经过验证的 HRQoL（EQ-5D-5L、Carer Quality of Life-7 dimensions [CarerQol-7D]）和生产力（工作生产力和活动障碍问卷：我们通过横断面在线调查对英国和法国的照护者进行了问卷调查。采用描述性统计方法对人口统计学、HRQoL 和经济负担数据进行了分析。经济负担是根据特定国家的最低工资和平均工资值确定的。分组分析对患有和不患有 SCD 的护理人员进行了研究：共招募了 69 名护理人员（英国 43 名；法国 26 名），其中 83% 为女性，22% 本身患有 SCD。照顾者 EQ-5D-5L 平均得分（标清）为 0.66 (0.28)（英国为 0.62；法国为 0.73），照顾者 Qol-7D 平均得分为 80.69 (24.40)（英国为 78.72 [25.79]；法国为 83.97 [22.01]）。使用 EQ-5D-5L 和 CarerQol-7D 测量的护理人员中，分别有 72% 和 70% 的人报告存在心理健康问题。68%的护理人员报告了经济问题，平均每年最低工资生产率损失为 4209 英镑和 3485 欧元，平均工资生产率损失增至 5391 英镑和 9319 欧元。敏感性分析确定了患有和未患有 SCD 的护理人员的额外 HRQoL 下降情况：结论：照顾 SCD 患者会影响照顾者的 HRQoL 和经济负担。需要进一步开展研究，以支持 SCD 照护者的复杂需求。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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