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.
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)
Study Type
OBSERVATIONAL
Enrollment
233
Online survey to capture indirect and out of pocket costs of Huntington's Disease in HDGECs and companions
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
St 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
...and 1 more locations
Quantify the indirect costs associated with productivity loss for HDGECs and companions
Productivity loss is measured by annual lost wages and it is collected in the survey's employment questionnaires and WPAI
Time frame: 12 months
Quantify out-of-pocket expenses for HDGECs and companions
The indirect costs associated with the total annual out-of-pocket expenses.
Time frame: 12 months
Identify the indirect costs associated with informal care received for HDGECs
The total informal care time received during a typical week
Time frame: 12 months
Quantify the indirect costs associated with non-work caregiving time for companions
The indirect costs associated with the annual opportunity costs of companion
Time frame: 12 months
Identify the reasons for HDGEC and companion's unemployment or underemployment
Time frame: 12 months
The proportion of Dual Role Companions, differentiated by HD stage of the companion
Time frame: 12 months
To understand traditional disease staging system based on total functional capacity (TFC)
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)
Time frame: 12 months
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