Abstract

Introduction. The prevalence of Huntington’s Disease (HD) in the state of Vermont has not been studied extensively and our best estimates have been based on extrapolations from national data. As a result, it has been difficult to assess the needs of these patients and provide a formal infrastructure for managing and following patients. The goal of this study was to quantify the number of patients living with an HD diagnosis in Vermont, and to examine the gaps in utilization of services that could increase the quality of life of patients and families. Methods. A survey was developed based on published studies, The Huntington’s Disease Society of America (HDSA) questionnaires, and preliminary discussions with the Chittenden County HD support group members. Surveys were completed by patients, family members, and professional caregivers and contained both quantitative and qualitative measures. Results. The HDSA estimates there are 62 individuals diagnosed with HD in Vermont, while Medicaid codes identify 69 patients. 15 surveys were received representing an estimated 22% of the study population. Responses indicated under-utilization of services by those patients living in and being cared for at home. Patients report regular visits to a neurologist, but are under-utilizing additional recommended services. Conclusions. A case management system that provides coordinated care for patients would potentially improve utilization of services, including long-term care planning, physical, and occupational therapy and psychological counseling. An in-patient facility located in the Burlington area with easy access to the aforementioned services and providing specialty care for HD patients could improve the infrastructure and our ability to follow these patients.