Are people living with Huntington’s Disease experiencing person-centered integrated care?
Are people living with Huntington’s Disease experiencing person-centered integrated care?
Background: Huntington's disease (HD) is among the most complex long-term neurological conditions, necessitating care and management from multiple partners within and beyond the health sector. However, there is a paucity of evidence describing how individuals receive this multifaceted care and whether current care provision adequately meets their needs.
Objective: to understand if current care provision is meeting the complex needs of people living with HD in England and assess their perceived need for integrated care.
Methods: a cross-sectional survey was co-designed with patient and public representatives, as part of a mixed-methods study to explore what integrated care means for people living with HD. The survey was distributed online and via charities, collecting quantitative and qualitative data. Descriptive statistics and content analysis were performed.
Results: a total of 153 people, from 45 counties in England, participated in the survey. When assessing person-centered coordinated care, 65% of respondents rated their care as very poor, poor, or expressed a neutral opinion; carers reported the lowest scores. Although 58% of the participants said it was extremely important to have a care coordinator, only 19% of people reported having one, with these coordinators being identified in only 40% of the counties. Nevertheless, people with access to a care coordinator reported markedly improved care experiences.
Conclusions: people living with HD commonly report fragmented care, geographical inequalities in care access, and unmet complex needs. Future research should focus on developing an HD integrated care model tailored to address these complex needs, including an evaluation of the cost-effectiveness of an HD care coordinator.
Bartolomeu Pires, Sandra Martins
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Kunkel, Dorit
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Goodwin, Nicholas
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Dace, Sally
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Culliford, David
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Kipps, Chrisopher
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Portillo, Mari Carmen
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Bartolomeu Pires, Sandra Martins
bac6d261-405a-4a39-9fe2-3f38deeacb22
Kunkel, Dorit
6b6c65d5-1d03-4a13-9db8-1342cd43f352
Goodwin, Nicholas
3ea7f88f-268a-43b7-94be-25323abe2f75
Dace, Sally
617290ee-3839-45e1-81ef-35c3220920c7
Culliford, David
25511573-74d3-422a-b0ee-dfe60f80df87
Kipps, Chrisopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
Portillo, Mari Carmen
f913b5c5-b949-48f2-b1d0-eb7505484d5c
Bartolomeu Pires, Sandra Martins, Kunkel, Dorit, Goodwin, Nicholas, Dace, Sally, Culliford, David, Kipps, Chrisopher and Portillo, Mari Carmen
(2024)
Are people living with Huntington’s Disease experiencing person-centered integrated care?
Journal of Huntington's Disease.
(doi:10.1177/18796397241288449).
Abstract
Background: Huntington's disease (HD) is among the most complex long-term neurological conditions, necessitating care and management from multiple partners within and beyond the health sector. However, there is a paucity of evidence describing how individuals receive this multifaceted care and whether current care provision adequately meets their needs.
Objective: to understand if current care provision is meeting the complex needs of people living with HD in England and assess their perceived need for integrated care.
Methods: a cross-sectional survey was co-designed with patient and public representatives, as part of a mixed-methods study to explore what integrated care means for people living with HD. The survey was distributed online and via charities, collecting quantitative and qualitative data. Descriptive statistics and content analysis were performed.
Results: a total of 153 people, from 45 counties in England, participated in the survey. When assessing person-centered coordinated care, 65% of respondents rated their care as very poor, poor, or expressed a neutral opinion; carers reported the lowest scores. Although 58% of the participants said it was extremely important to have a care coordinator, only 19% of people reported having one, with these coordinators being identified in only 40% of the counties. Nevertheless, people with access to a care coordinator reported markedly improved care experiences.
Conclusions: people living with HD commonly report fragmented care, geographical inequalities in care access, and unmet complex needs. Future research should focus on developing an HD integrated care model tailored to address these complex needs, including an evaluation of the cost-effectiveness of an HD care coordinator.
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bartolomeu-pires-et-al-2024-are-people-living-with-huntington-s-disease-experiencing-person-centered-integrated-care
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Accepted/In Press date: 5 September 2024
e-pub ahead of print date: 8 October 2024
Identifiers
Local EPrints ID: 495411
URI: http://eprints.soton.ac.uk/id/eprint/495411
ISSN: 1879-6397
PURE UUID: a7d72b64-0827-4b4a-a74b-c6b570154e4b
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Date deposited: 13 Nov 2024 17:31
Last modified: 14 Nov 2024 02:58
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Author:
Sandra Martins Bartolomeu Pires
Author:
Nicholas Goodwin
Author:
Sally Dace
Author:
David Culliford
Author:
Chrisopher Kipps
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