TY - JOUR
T1 - Health Care Delivery Practices in Huntington's Disease Specialty Clinics
T2 - An International Survey
AU - Frich, Jan C.
AU - Rae, Daniela
AU - Roxburgh, Richard
AU - Miedzybrodzka, Zofia H.
AU - Edmondson, Mary
AU - Pope, Erika Bjorklund
AU - Goodman, LaVonne
AU - Haddad, Monica S.
AU - Giuliano, Joe
AU - Nelson, Eugene C.
AU - Guttman, Mark
AU - Nance, Martha
N1 - The CHDI Foundation, Inc. funds Enroll-HD and the activities of the Enroll-HD Care Improvement Committee, including the present survey. We would like to acknowledge the Enroll-HD and REGISTRY administrative staff that assisted in the recruitment of sites and sites that completed the survey.
PY - 2016/7/1
Y1 - 2016/7/1
N2 - 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.
AB - 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.
KW - Huntington’s disease
KW - health services
KW - quality of health care
U2 - 10.3233/JHD-160192
DO - 10.3233/JHD-160192
M3 - Article
C2 - 27372053
VL - 5
SP - 207
EP - 213
JO - Journal of Huntington's disease
JF - Journal of Huntington's disease
SN - 1879-6397
IS - 2
ER -