{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,2]],"date-time":"2026-09-02T17:08:54Z","timestamp":1788368934339,"version":"build-2803163510"},"reference-count":50,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2024,10,8]],"date-time":"2024-10-08T00:00:00Z","timestamp":1728345600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2024,10,8]],"date-time":"2024-10-08T00:00:00Z","timestamp":1728345600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"National Institute for Health and Care Research Applied Research Collaborations Wessex","award":["NIHR-INF-1701"],"award-info":[{"award-number":["NIHR-INF-1701"]}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Huntington's Disease"],"published-print":{"date-parts":[[2024,11]]},"abstract":"<jats:p>\n                    <jats:bold>Background:<\/jats:bold>\n                    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.\n                    <jats:bold>Objective:<\/jats:bold>\n                    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.\n                    <jats:bold>Methods:<\/jats:bold>\n                    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.\n                    <jats:bold>Results:<\/jats:bold>\n                    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.\n                    <jats:bold>Conclusions:<\/jats:bold>\n                    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.\n                  <\/jats:p>","DOI":"10.1177\/18796397241288449","type":"journal-article","created":{"date-parts":[[2024,12,20]],"date-time":"2024-12-20T04:49:17Z","timestamp":1734670157000},"page":"535-546","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":6,"title":["Are people living with Huntington's disease experiencing person-centered integrated care?"],"prefix":"10.1177","volume":"13","author":[{"given":"Sandra","family":"Bartolomeu Pires","sequence":"first","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK"},{"name":"School of Health Sciences, University of Southampton, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dorit","family":"Kunkel","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK"},{"name":"School of Health Sciences, University of Southampton, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicholas","family":"Goodwin","sequence":"additional","affiliation":[{"name":"Central Coast Research Institute for Integrated Care, Central Coast Local Health District and University of Newcastle, Gosford, New South Wales, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sally","family":"Dace","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Culliford","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK"},{"name":"School of Health Sciences, University of Southampton, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Kipps","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK"},{"name":"Clinical and Experimental Sciences, Faculty of Medicine, University of Southampton, Southampton, UK"},{"name":"Wessex Neurological Centre, University Hospital Southampton NHS Foundation Trust, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mari Carmen","family":"Portillo","sequence":"additional","affiliation":[{"name":"NIHR Applied Research Collaboration Wessex, Southampton Science Park, Innovation Centre, Southampton, UK"},{"name":"School of Health Sciences, University of Southampton, Southampton, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2024,10,8]]},"reference":[{"key":"e_1_3_3_2_2","volume-title":"Neuro-patience - The national neurology patient experience Survey 2018\/19: Policy report","author":"The Neurological Alliance","year":"2019","unstructured":"The Neurological Alliance. 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