Indirect and Out-of-Pocket Costs of Huntington's Disease in the United States
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 233
- 试验地点
- 11
- 主要终点
- Quantify the indirect costs associated with productivity loss for HDGECs and companions
研究概览
简要总结
Huntington's disease (HD) is a rare, inherited and progressive neurodegenerative disorder for which hallmark symptoms include movement disorders, loss of cognitive faculties and psychiatric disturbances. With the progression of the disease, patients require increasing level of medical care, caregiver support, and long-term care, which lead to substantial burden of illness. Very little data are available on the direct or indirect costs for HD. The direct medical costs of HD in the US have been summarized from retrospective commercial and Medicaid claims data analysis. The indirect and out-of-pocket costs of HD in the US have not been quantified. This study will help to bridge these gaps.
This study is a single-assessment, cross-sectional online survey administered to Huntington disease gene expansion carriers (HDGECs) and companions of HDGECs by HD stage to understand the indirect and out-of-pocket costs of Huntington's disease in the US.
详细描述
The survey collects the following data from each HDGEC and companion:
- Participant demographics (for HDGECs and companion)
- Informal care received (for HDGECs only)
- Out of pocket HD costs (for HDGECs and companion)
- Current employment status (for HDGECs and companion)
- Non-work and work care giving time that companion spends taking care of HDGEC (for companion only)
- Work Productivity and Activity Impairment (WPAI) Questionnaire (for HDGECs and companion)
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 21 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- 未提供
排除标准
- 未提供
结局指标
主要结局
Quantify the indirect costs associated with productivity loss for HDGECs and companions
时间窗: 12 months
Productivity loss is measured by annual lost wages and it is collected in the survey's employment questionnaires and WPAI
Quantify out-of-pocket expenses for HDGECs and companions
时间窗: 12 months
The indirect costs associated with the total annual out-of-pocket expenses.
Identify the indirect costs associated with informal care received for HDGECs
时间窗: 12 months
The total informal care time received during a typical week
Quantify the indirect costs associated with non-work caregiving time for companions
时间窗: 12 months
The indirect costs associated with the annual opportunity costs of companion
次要结局
- The proportion of Dual Role Companions, differentiated by HD stage of the companion(12 months)
- Identify the reasons for HDGEC and companion's unemployment or underemployment(12 months)
- To understand traditional disease staging system based on total functional capacity (TFC)(12 months)