title: Health Care Delivery Practices in Huntington's Disease Specialty Clinics: An International Survey.
abstract: Little is known about the organization of clinical services for Huntington's disease (HD).
  
  
  
  To describe how health care services are organized and delivered in HD-clinics taking part in or eligible for the Enroll-HD study.
  
  
  
  In 2014, a 69-item survey was administered to sites taking part in or eligible for the Enroll-HD study.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Department of Neurology, Oslo University Hospital, Oslo, Norway.|Institute of Health and Society, University of Oslo, Oslo, Norway.
authors.forename: Jan C
authors.initials: JC
authors.lastname: Frich
authors.affiliation: Department of Clinical Genetics, NHS Grampian, Aberdeen, Scotland, UK.|Health Services Research Unit, University of Aberdeen, Aberdeen, Scotland, UK.
authors.forename: Daniela
authors.initials: D
authors.lastname: Rae
authors.affiliation: Department of Neurology, Auckland City Hospital, Auckland, New Zealand.
authors.forename: Richard
authors.initials: R
authors.lastname: Roxburgh
authors.affiliation: Department of Clinical Genetics, NHS Grampian, Aberdeen, Scotland, UK.
authors.forename: Zofia H
authors.initials: ZH
authors.lastname: Miedzybrodzka
authors.affiliation: HD Reach, Raleigh, NC, USA.
authors.forename: Mary
authors.initials: M
authors.lastname: Edmondson
authors.affiliation: Pacific Northwest University of Health Sciences, Yakima, WA, USA.
authors.forename: Erika Bjorklund
authors.initials: EB
authors.lastname: Pope
authors.affiliation: Huntingtons Disease Drug Works, Lake Forest Park, WA, USA.
authors.forename: LaVonne
authors.initials: L
authors.lastname: Goodman
authors.affiliation: Department of Neurology, School of Medicine, University of São Paulo, São Paulo, SP, Brazil.
authors.forename: Monica S
authors.initials: MS
authors.lastname: Haddad
authors.affiliation: CHDI Management/CHDI Foundation, Princeton, NJ, USA.
authors.forename: Joe
authors.initials: J
authors.lastname: Giuliano
authors.affiliation: The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, NH, USA.
authors.forename: Eugene C
authors.initials: EC
authors.lastname: Nelson
authors.affiliation: Centre for Movement Disorders, Toronto, ON, Canada.
authors.forename: Mark
authors.initials: M
authors.lastname: Guttman
authors.affiliation: Struthers Parkinson's Center, Golden Valley, MN, USA.|Hennepin County Medical Center, MN, USA.
authors.forename: Martha
authors.initials: M
authors.lastname: Nance
mesh_terms: D003695:Delivery of Health Care / Q000379:methods* / Q000458:organization & administration / Q000706:statistics & numerical data*; D019468:Disease Management; D005260:Female; D006306:Health Surveys; D006801:Humans; D006816:Huntington Disease / Q000453:epidemiology* / Q000628:therapy*; D007391:International Cooperation; D008297:Male
keywords: Huntington’s disease; health services; quality of health care