PHMR Limited, London, UK.
Arvelle Therapeutics GmbH, A company of Angelini Pharma, Zug, Switzerland.
J Med Econ. 2022 Jan-Dec;25(1):66-76. doi: 10.1080/13696998.2021.2018871.
The aim of this study was to capture and measure the impact of caregiving for an adult with uncontrolled drug-resistant focal-onset seizures (FOS) on the caregivers' quality of life (QoL), and to quantify the costs of productivity losses associated with providing informal care in this patient population.
An online survey, which included the EQ-5D-5L, CarerQol-7D and the Work Productivity and Activity Impairment: Specific-Health Problem (WPAI:SHP) questionnaires, was administered to caregivers of individuals with uncontrolled drug-resistant FOS in the United Kingdom (UK), France, Spain, Germany, Italy, and Sweden.
The study included 345 caregivers. Most were males, aged between 25 and 34 years old whose caring responsibilities took between 15 and 24 h per week. The caregivers' mean EQ-5D-5L score was 0.6, with 95% confidence intervals (CI) of [0.58, 0.63], whilst the mean CarerQol-7D score was 72.61 [70.46, 74.76]. Caregivers' mental health was the most substantially affected aspect of their QoL. In addition, most caregivers reported deriving some or a lot of fulfilment out of their caregiving tasks. The WPAI:SHP showed that the mean percentage of work impairment due to caregiving responsibilities was 63%, [59.75, 66.26]. The mean annualised costs of productivity losses per caregiver were estimated at €14,872 [€11,908; €17,888].
One limitation consisted in the use of an online survey instead of a face-to-face interview. However, the medical terms were clearly explained, and examples were provided to help participants to give accurate responses. Another limitation was that the respondents self-reported as caregivers. Efforts were made to mitigate this weakness by using screener questions.
This study found that providing informal care for people with uncontrolled drug-resistant FOS had a negative impact on caregivers' QoL, with mental health being affected the most. However, caregivers found their role fulfilling and had support with their caring tasks.
本研究旨在评估和测量照护药物难治性局灶性起始发作（FOS）成人患者对照护者生活质量（QoL）的影响，并量化该患者群体中提供非正规护理相关的生产力损失成本。
本研究采用在线问卷调查，调查对象为英国（UK）、法国、西班牙、德国、意大利和瑞典的药物难治性局灶性起始发作未控制患者的照护者，调查内容包括 EQ-5D-5L、CarerQol-7D 和工作生产效率和活动障碍：特定健康问题（WPAI:SHP）问卷。
本研究共纳入 345 名照护者，其中大多数为男性，年龄在 25 至 34 岁之间，每周照顾时长为 15 至 24 小时。照护者的 EQ-5D-5L 平均得分为 0.6，95%置信区间（CI）为 [0.58, 0.63]，而 CarerQol-7D 的平均得分为 72.61 [70.46, 74.76]。照护者的心理健康是其 QoL 受影响最严重的方面。此外，大多数照护者表示从照护任务中获得了一些或很大的满足感。WPAI:SHP 显示，由于照护责任导致的工作障碍平均百分比为 63% [59.75, 66.26]。每位照护者每年因生产力损失而产生的费用估计为 14872 欧元[€11908；€17888]。
研究的局限性之一在于使用在线调查而非面对面访谈。然而，医学术语都经过了明确的解释，并提供了示例以帮助参与者给出准确的回答。另一个局限性是，受访者是自我报告的照护者。为了减轻这一弱点，研究采用了筛选问题。
本研究发现，为药物难治性局灶性起始发作未控制患者提供非正规护理对照护者的 QoL 产生负面影响，心理健康受到的影响最大。然而，照护者发现他们的角色有意义，并在照顾任务中得到支持。
