HD-Charge: Indirect and Out-of-Pocket Costs of Huntington's Disease in the United States
- Conditions
- Huntington's Disease
- Registration Number
- NCT03628235
- Lead Sponsor
- CHDI Foundation, Inc.
- Brief Summary
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.
- Detailed Description
The survey collects the following data from each HDGEC and companion:
1. Participant demographics (for HDGECs and companion)
2. Informal care received (for HDGECs only)
3. Out of pocket HD costs (for HDGECs and companion)
4. Current employment status (for HDGECs and companion)
5. Non-work and work care giving time that companion spends taking care of HDGEC (for companion only)
6. Work Productivity and Activity Impairment (WPAI) Questionnaire (for HDGECs and companion)
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 233
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Quantify the indirect costs associated with non-work caregiving time for companions 12 months The indirect costs associated with the annual opportunity costs of companion
Quantify the indirect costs associated with productivity loss for HDGECs and companions 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 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 12 months The total informal care time received during a typical week
- Secondary Outcome Measures
Name Time Method 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 For HDGECs and Companions: Understand how the traditional disease staging system, based on the TFC score, relates to a staging system based on resource utilization questionnaire and comorbid conditions developed in Divino et al. (2013)
Trial Locations
- Locations (11)
St. Joseph's Hospital and Medical Center
🇺🇸Phoenix, Arizona, United States
Rocky Mountain Movement Disorder, P.C.
🇺🇸Englewood, Colorado, United States
University of South Florida
🇺🇸Tampa, Florida, United States
Hereditary Neurological Disease Centre, Inc.
🇺🇸Wichita, Kansas, United States
Washington University
🇺🇸Saint Louis, Missouri, United States
Columbia University Medical Center
🇺🇸New York, New York, United States
The Ohio State University
🇺🇸Columbus, Ohio, United States
University of Pittsburgh
🇺🇸Pittsburgh, Pennsylvania, United States
Vanderbilt University Medical Center
🇺🇸Nashville, Tennessee, United States
University of Texas Health Science Center at Houston
🇺🇸Houston, Texas, United States
Scroll for more (1 remaining)St. Joseph's Hospital and Medical Center🇺🇸Phoenix, Arizona, United States