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

32 Citations (Scopus)

15 Downloads (Pure)

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 = "SAGE Publications Ltd",

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 -