Huntington's Disease: Assessing the Needs of Patients and Caregivers in a Rural State

Introduction. The prevalence of Huntington's Disease (HD) in the state of Vermont has not been studied extensively and currently our best estimates have been based on extrapolations from national data. Due to the lack of data, it has been difficult to assess the needs of these patients and as a result, a formal infrastructure for managing and following patients with HD does not exist. The goal of this study was to quantify the number of patients living with a 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. The project was a partnership between the University of Vermont College of Medicine, and the Visiting Nurses Association, and was completed by College of Medicine students. A survey was developed based on published studies, The Huntington's Disease Society of America (HDSA) questionnaires, and preliminary discussions with Chittenden County HD patients, their families and care-providers about needs. Surveys were completed by HD patients, family members, and professional caregivers. The questionnaire contained both quantitative and qualitative data.

Results. The HDSA estimates there are 62 individuals diagnosed with HD living in Vermont, while Medicaid codes indicate there are 69. A total of 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. Although patients are regularly being seen by a neurologist, they are under-utilizing physical, occupational, and speech therapy. Location of both outpatient and inpatient services and distance from patient's home were top priorities and greatest concerns for patients surveyed with Huntington's Disease. These factors caused stress among patients as they considered the future progression of their disease.

Conclusions. Having a case management system would potentially allow improved utilization of resources, including long-term care planning, and an in-patient facility located in the Burlington, Vermont, area with easy access to multiple services would be of great benefit. This type of approach could be utilized in other rural settings.