Addressing the Value of Multidisciplinary Clinical Care in Huntington’s Disease: A Snapshot of a New Huntington’s Disease Center

Autor:	Adrianna Carey, Pedro Gonzalez-Alegre, Kelly Gasper, Jennifer Klapper, Baochan Tran, Tanya Bardakjian, Julia Wood, Alex Zwil, Yuliis Bell, Meredith Pauly, Kathy Lawler
Rok vydání:	2019
Předmět:	0301 basic medicine medicine.medical_specialty Population Disease Single Center Hospitals Special 03 medical and health sciences Cellular and Molecular Neuroscience 0302 clinical medicine Huntington's disease Multidisciplinary approach Humans Medicine Family history Predictive testing education Retrospective Studies Clinical Trials as Topic Health Services Needs and Demand education.field_of_study business.industry Chorea Patient Acceptance of Health Care medicine.disease Huntington Disease 030104 developmental biology Family medicine Neurology (clinical) medicine.symptom business 030217 neurology & neurosurgery
Zdroj:	Journal of Huntington's Disease. 8:501-507
ISSN:	1879-6400 1879-6397
DOI:	10.3233/jhd-190355
Popis:	Background Clinical care for Huntington's disease (HD) is often provided in experienced centers that provide multidisciplinary care. However, the value of these centers and their uptake by HD families remain unknown. Objective To describe the services provided by a new HD center, including estimates of capture of the population served. Methods Retrospective review of a HD Center launched in 2015, including quantitative and qualitative data on clinic visits, demographic and clinical data. Results We observed a rapid and ongoing growth on the annual number of clinic encounters, with high demand for in-clinic multidisciplinary care. Using census data and estimates of HD prevalence, we determined that we served about 20% of local patients with HD. Most HD patients received pharmacological treatment for psychiatric symptoms, and over half were treated for chorea. About 25% of new HD diagnoses were on patients without family history of HD. Finally, the demand for predictive testing in at risk individuals significantly increased following the press release reporting the successful completion of the Ionis-HTTRx (RG 6042) trial. Conclusions This report indicates a high demand for multidisciplinary care by HD families, supporting its value, providing a snapshot of the organization and function of a single center. Furthermore, it demonstrates how dissemination of news related to research advances influence clinical behavior. Reporting similar information from other HD centers to would provide us with a more global view of the status of HD care across multiple geographical areas.
Databáze:	OpenAIRE
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