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

Jan C. Frich; Daniela Rae; Richard Roxburgh; Zofia H. Miedzybrodzka; Mary Edmondson; Erika Bjorklund Pope; LaVonne Goodman; Monica S. Haddad; Joe Giuliano; Eugene C. Nelson; Mark Guttman; Martha Nance

doi:10.3233/JHD-160192

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

Jan C. Frich, Daniela Rae, Richard Roxburgh, Zofia H. Miedzybrodzka, Mary Edmondson, Erika Bjorklund Pope, LaVonne Goodman, Monica S. Haddad, Joe Giuliano, Eugene C. Nelson, Mark Guttman, Martha Nance

Research output: Contribution to journal › Article › peer-review

25 Citations (Scopus)

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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.

Original language	English
Pages (from-to)	207-213
Number of pages	7
Journal	Journal of Huntington's disease
Volume	5
Issue number	2
DOIs	https://doi.org/10.3233/JHD-160192
Publication status	Published - 1 Jul 2016

Bibliographical note

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.

Keywords

Huntington’s disease
health services
quality of health care

Access to Document

10.3233/JHD-160192Licence: CC BY-NC

Health Care Delivery Practices in Huntington’s Disease Specialty Clinics: An International Survey
This article is published online with Open Access and distributed under the terms of the Creative Commons Attribution Non-Commercial License. https://creativecommons.org/licenses/by-nc/4.0/
Final published version, 65.6 KBLicence: CC BY-NC

Cite this

@article{5d1b32eb35774287b516939e19f2b95f,

title = "Health Care Delivery Practices in Huntington's Disease Specialty Clinics: An International Survey",

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.",

keywords = "Huntington{\textquoteright}s disease, health services, quality of health care",

author = "Frich, {Jan C.} and Daniela Rae and Richard Roxburgh and Miedzybrodzka, {Zofia H.} and Mary Edmondson and Pope, {Erika Bjorklund} and LaVonne Goodman and Haddad, {Monica S.} and Joe Giuliano and Nelson, {Eugene C.} and Mark Guttman and Martha Nance",

note = "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.",

year = "2016",

month = jul,

day = "1",

doi = "10.3233/JHD-160192",

language = "English",

volume = "5",

pages = "207--213",

journal = "Journal of Huntington's disease",

issn = "1879-6397",

publisher = "IOS Press",

number = "2",

}

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

SN - 1879-6397

VL - 5

SP - 207

EP - 213

JO - Journal of Huntington's disease

JF - Journal of Huntington's disease

IS - 2

ER -