Department of Clinical Pharmacy, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
School of Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, USA.
Epilepsy Behav. 2018 Mar;80:109-113. doi: 10.1016/j.yebeh.2017.12.034. Epub 2018 Feb 2.
The objective of this study was to estimate the annual direct and indirect costs associated with Dravet Syndrome (DS).
A survey was electronically administered to the caregivers of patients with DS treated at Children's Hospital Colorado. Survey domains included healthcare utilization of the patient with DS and DS caregiver work productivity and activity impairment. Patient healthcare utilization was measured using modified questions from the National Health Interview Survey; caregiver work productivity and activity impairment were measured using modified questions from the Work Productivity and Activity Impairment questionnaire. Direct costs were calculated by multiplying the caregiver-reported healthcare utilization rates by the mean unit cost for each healthcare utilization category. Indirect costs included lost productivity, income loss, and lost leisure time. The indirect costs were a function of caregiver-reported hours spent caregiving and an hourly unit cost.
The survey was emailed to 60 DS caregivers, of which 34 (57% response rate) responded. Direct costs on average were $27,276 (95% interval: $15,757, $41,904) per patient with DS. Hospitalizations ($11,565 a year) and in-home medical care visits ($9894 a year) were substantial cost drivers. Additionally, caregivers reported extensive time spent providing care to an individual with DS. This caregiver time resulted in average annual indirect costs of $81,582 (95% interval: $57,253, $110,151), resulting in an average total annual financial burden of $106,378 (95% interval: $78,894, $137,906).
Dravet Syndrome results in substantial healthcare utilization, financial burden, and time commitment. Establishing evidence on the financial burden of DS is essential to understanding the overall impact of DS, identifying potential areas for support needs, and assessing the impact of novel treatments as they become available. Based on the study findings, in-home visits, hospitalizations, and lost productivity and leisure time of caregivers are key domains for DS economic evaluations. Future research should extend these estimates to include the potential additional healthcare utilization of the DS caregiver.
本研究旨在估计与 Dravet 综合征（DS）相关的年度直接和间接成本。
对在科罗拉多儿童医院接受治疗的 DS 患者的护理人员进行了电子调查。调查领域包括 DS 患者的医疗保健利用情况以及 DS 护理人员的工作生产力和活动障碍。患者的医疗保健利用情况使用国家健康访谈调查的修改问题进行衡量；护理人员的工作生产力和活动障碍使用工作生产力和活动障碍问卷的修改问题进行衡量。直接成本是通过将护理人员报告的医疗保健利用率乘以每个医疗保健利用类别的平均单位成本来计算的。间接成本包括生产力损失、收入损失和休闲时间损失。间接成本是护理人员报告的照顾时间和每小时单位成本的函数。
这项调查以电子邮件的形式发给了 60 名 DS 护理人员，其中 34 名（57%的回复率）做出了回应。DS 患者的平均直接成本为 27276 美元（95%区间：15757 美元，41904 美元）。住院治疗（每年 11565 美元）和家庭医疗访问（每年 9894 美元）是主要的成本驱动因素。此外，护理人员报告了大量时间来照顾患有 DS 的个体。这种护理人员时间导致平均每年间接成本为 81582 美元（95%区间：57253 美元，110151 美元），导致平均每年总财务负担为 106378 美元（95%区间：78894 美元，137906 美元）。
Dravet 综合征导致大量的医疗保健利用、财务负担和时间投入。确定 DS 的财务负担的证据对于理解 DS 的整体影响、确定潜在的支持需求领域以及评估新疗法的影响至关重要，因为这些疗法已经问世。根据研究结果，家庭访问、住院治疗以及护理人员的生产力和休闲时间损失是 DS 经济评估的关键领域。未来的研究应该将这些估计扩展到包括 DS 护理人员潜在的额外医疗保健利用。
