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. 2016 Jun 27;5(2):207-13.
doi: 10.3233/JHD-160192.

Health Care Delivery Practices in Huntington's Disease Specialty Clinics: An International Survey

Free PMC article

Health Care Delivery Practices in Huntington's Disease Specialty Clinics: An International Survey

Jan C Frich et al. J Huntingtons Dis. .
Free PMC article


Background: Little is known about the organization of clinical services for Huntington's disease (HD).

Objective: To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study.

Methods: In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study.

Results: Of 231 sites surveyed, 121 (52.2%) sites in Europe, North America, Latin America, and Oceania responded. Most sites in the sample serve large populations, with 61.1% serving more than 1.5 million people, and a further 33% serving >500,000. Almost all (86.0%) centers see patients from outside their region. The majority of centers (59.7%) follow 50-199 patients, 21.9% care for more than 200. Most centers provide care in all stages of HD, and nearly all review pre-symptomatic cases. Multidisciplinary case reviews are offered in 54.5% of sites, with outreach clinics offered by 48.1%. Videoconferencing and telemedicine are used by 23.6%. Separate consultations for caregivers are offered in more than half of the centers. Most centers (70.4%) report following published guidelines or local care pathways for HD.

Conclusions: Most centers serve a large population and use a multidisciplinary approach. The survey gives insight into factors underpinning HD service delivery globally. There is a need for more in-depth studies of clinical practice to understand how services are organized and how such features may be associated with quality of care.

Keywords: Huntington’s disease; health services; quality of health care.

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    1. Bates PG, Tabrizi SJ, Jones L. Huntington’s disease. 4th Edition Oxford: Oxford University Press, 2014.
    1. Papoutsi M, Labuschagne I, Tabrizi SJ, Stout JC The cognitive burden in Huntington’s disease: Pathology, phenotype, and mechanisms of compensation, Mov Disord. 2014;29(5):673–83. doi: 10.1002/mds.25864 - DOI - PubMed
    1. Paulsen JS. Cognitive impairment in Huntington’s disease: Diagnosis and treatment, Curr Neurol Neurosci Re. 2011;11(5):474–83. doi:10.1007/s11910-011-0215-x - DOI - PMC - PubMed
    1. Busse M, Quinn L, Debono K, Jones K, Collett J, Playle R, et al. A randomized feasibility study of a 12-week community-based exercise program for people with Huntington’s disease, J Neurol Phys Ther. 2013;37(4):149–58. doi: 10.1097/NPT.0000000000000016 - DOI - PubMed
    1. Piira A, van Walsem MR, Mikalsen G, Nilsen KH, Knutsen S, Frich JC Effects of a one year intensive multidisciplinary rehabilitation program for patients with Huntington’s disease: A prospective intervention study, PLoS Curr. 2013;5.pii: ecurrents.hd.9504af71e0d1f87830c25c394be47027. doi: 10.1371/currents.hd.9504af71e0d1f87830c25c394be47027 - DOI - PMC - PubMed

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