1. Health Care Delivery Practices in Huntington's Disease Specialty Clinics: An International Survey.
- Author
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Frich JC, Rae D, Roxburgh R, Miedzybrodzka ZH, Edmondson M, Pope EB, Goodman L, Haddad MS, Giuliano J, Nelson EC, Guttman M, and Nance M
- Subjects
- Delivery of Health Care organization & administration, Disease Management, Female, Health Surveys, Humans, Male, Delivery of Health Care methods, Delivery of Health Care statistics & numerical data, Huntington Disease epidemiology, Huntington Disease therapy, International Cooperation
- Abstract
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.
- Published
- 2016
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