Abstracts from HSG 2019
- PDF / 783,362 Bytes
- 41 Pages / 595.276 x 790.866 pts Page_size
- 79 Downloads / 276 Views
Abstracts from HSG 2019
# The American Society for Experimental NeuroTherapeutics, Inc. 2019
1 Quality of Care for Huntington’s Disease in the United States: Findings from a National Survey of Patients and Caregivers
2 Behavioral Distinctions Between Physical and Cognitive Apathy Observed in Premanifest Huntington’s Disease (HD)
Karen E. Anderson1, Jack Griffin2, Al Kinel3, Abdul R. Shaikh4, Temitope Olofintuyi4, Stevan Ramirez5, Joni Steinman3,5, George J. Yohrling6, Shari Kinel5 1 Georgetown University, Department of Psychiatry & Department of Neurology, Washington DC, USA; 2Griffin Foundation, Naples, FL, USA; 3Strategic Interests, LLC, Rochester, NY, USA; 4Guidehouse LLP, Washington DC, USA; 5Huntington Study Group, Rochester, NY, USA; 6Huntington’s Disease Society of America, New York, NY, USA
Kelly Atkins, Sophie Andrews, Julie Stout, Trevor T-J Chong Turner Institute for Brain and Mental Health, Monash University, Melbourne, Victoria, Australia (all authors)
Background: Little is known about the quality of care for people living with Huntington’s disease (HD) in the United States. Objective: To enhance our understanding of the HD care experience for patients and families, and identify gaps in care provision in the United States. This study focused specifically on care needs outside of routine clinic visits. Methods: Web-based survey for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members were disseminated via social media and patient advocacy partners from April–May 2017. Survey completion required 5– 10 min. Results: Total responses were 797, (n = 585 caregiver/family respondents; n = 212 PAHD) from 45 states. Overall 459 (57.6%) answered questions about current level of care provision. Of these, 41.0% reported receiving medical care, 5.7% community care, 31.4% both medical and community care, and 22.0% reported having no current medical or community care. Top reasons cited for receiving ‘No other care support for HD’ (n = 101) were “high cost of care” (27.7%) and “live too far away” (26.7%). Caregiver/ family respondents reported helping the affected individual with budget/ finances (60.5%), housekeeping (57.1%), daily help (53.2%), finding community resources (42.3%), safety (38.1%), medical care (33.9%), home physical therapy (16.0%), and meals on wheels (5.9%). Questioning about healthcare visits revealed that patients were only given information/ discussed next steps half (53.1%) of the time, but questions about depression and other mental health issues were more routinely explored (89.9%). Conclusions: A significant proportion of HD care is currently provided by caregivers at home, greatly magnifying the burden of disease. Enhancing resources for both formal and informal care for patients and families should be a central goal for HD organizations. Development of patient/caregiver outcome measures to track impact of any interventions is crucial. Lay Summary: This project identifies gaps in care that are experi
Data Loading...
