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。
Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study.
机构信息
Department Haematology, Addenbrooke's Hospital, Cambridge, UK.
Putnam PHMR, Ceva House, Excelsior Road, Ashby-de-la-Zouch, LE65 1NG, UK.
出版信息
J Patient Rep Outcomes. 2024 Sep 26;8(1):110. doi: 10.1186/s41687-024-00784-y.
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.
背景
镰状细胞病（SCD）是一种影响红细胞和向身体组织输送氧气的遗传性血液疾病，其特征是溶血性贫血、疼痛发作、疲劳以及具有急性和慢性维度的终末器官损伤。照顾 SCD 患者给非正规照护者带来了沉重的负担。本研究旨在评估 SCD 患者的健康相关生活质量（HRQoL）和经济负担对照护者的影响。
方法
通过横断面在线调查，在英国（UK）和法国向照护者发放经过验证的 HRQoL（EQ-5D-5L、照顾者生活质量-7 维度量表[CarerQol-7D]）和生产力（工作效率和活动障碍问卷：特定健康问题[WPAI：SHP]）问卷。使用描述性统计方法分析人口统计学、HRQoL 和经济负担数据。使用各国最低工资和平均工资值来确定经济负担。亚组分析考察了有和没有 SCD 的照护者。
结果
共招募了 69 名照护者（英国 43 名，法国 26 名），83%为女性，22%本身患有 SCD。照护者的平均（SD）EQ-5D-5L 评分为 0.66（0.28）（英国 0.62；法国 0.73），平均 CarerQol-7D 评分为 80.69（24.40）（英国 78.72[25.79]；法国 83.97[22.01]）。使用 EQ-5D-5L 和 CarerQol-7D 分别测量，分别有 72%和 70%的照护者报告存在心理健康问题。68%的照护者报告存在经济问题，平均每年最低工资生产力损失为 4209 英镑和 3485 欧元，平均工资分别增加到 5391 英镑和 9319 欧元。敏感性分析确定了有和没有 SCD 的照护者的额外 HRQoL 下降。
结论
照顾 SCD 患者会影响照护者的 HRQoL 和经济负担。需要进一步研究以支持 SCD 照护者的复杂需求。
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