{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,7]],"date-time":"2026-05-07T16:59:13Z","timestamp":1778173153002,"version":"3.51.4"},"reference-count":25,"publisher":"SAGE Publications","issue":"4","license":[{"start":{"date-parts":[[2023,12,15]],"date-time":"2023-12-15T00:00:00Z","timestamp":1702598400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JHD"],"published-print":{"date-parts":[[2023,12,15]]},"abstract":"<jats:p>Background: Huntington\u2019s disease (HD) is a rare inherited neurodegenerative disorder characterized by complex evolving needs that change as the condition progresses. There is limited understanding about the organization of HD clinical services and their resourcing in the United Kingdom (UK). Objective: To understand the organization and resourcing of specialist HD services for people with HD (PwHD) in the UK Methods: This cross-sectional study collected quantitative data via on online survey, and qualitative data via telephone semi-structured interviews. Descriptive statistics were used to describe quantitative outcomes, and qualitative results were analyzed using content analysis. Results: A total of 31 specialist services for HD were identified. Of the 27 services that completed the online survey, 23 had an active multidisciplinary team of healthcare professionals (HCPs) and were led primarily by a mental health trust (26%) or tertiary referral hospital (26%). Specialist services offered outpatient clinics (96%), outreach in the community (74%), telemedicine (70%), inpatient beds (26%) and satellite clinics (26%). Many services indicated that their capacity (ability to see patients as often as needed with current resources) was difficult, with some services reporting more difficulty at the early or later stages of HD. Key resourcing gaps were identified with access to facilities, HCPs and referral networks. Conclusions: This research highlights the variation in organization and capacity within individual HD services as well as current resourcing and gaps in access that influence this capacity. Further research should be done to understand the impact of service organization and current resourcing gaps in access on the quality of care provided for PwHD in the UK.<\/jats:p>","DOI":"10.3233\/jhd-220560","type":"journal-article","created":{"date-parts":[[2023,12,19]],"date-time":"2023-12-19T12:24:16Z","timestamp":1702988656000},"page":"363-370","source":"Crossref","is-referenced-by-count":5,"title":["An Overview of Specialist Services for Huntington\u2019s Disease in the United Kingdom"],"prefix":"10.1177","volume":"12","author":[{"given":"Rosa","family":"Willock","sequence":"first","affiliation":[{"name":"HCD Economics, Cheshire, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hugh","family":"Rickards","sequence":"additional","affiliation":[{"name":"Birmingham and Solihull Mental Health NHS Foundation Trust, Birmingham, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anne E.","family":"Rosser","sequence":"additional","affiliation":[{"name":"Schools of Medicine and Biosciences, Cardiff University, Cardiff, Wales, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alistair","family":"Haw","sequence":"additional","affiliation":[{"name":"Scottish Huntington\u2019s Association, Paisley, Scotland, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cath","family":"Stanley","sequence":"additional","affiliation":[{"name":"Huntington\u2019s Disease Association, Liverpool, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pushpa","family":"Hossain","sequence":"additional","affiliation":[{"name":"HCD Economics, Cheshire, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Idaira","family":"Rodr\u00edguez-Santana","sequence":"additional","affiliation":[{"name":"HCD Economics, Cheshire, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Doherty","sequence":"additional","affiliation":[{"name":"HCD Economics, Cheshire, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Blair","sequence":"additional","affiliation":[{"name":"Roche Products Ltd., Welwyn Garden City, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wendy","family":"Kane","sequence":"additional","affiliation":[{"name":"Roche Products Ltd., Welwyn Garden City, England, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","reference":[{"issue":"1","key":"10.3233\/JHD-220560_ref1","doi-asserted-by":"crossref","first-page":"153","DOI":"10.1007\/s13311-013-0244-z","article-title":"Treatment of Huntington\u2019s disease","volume":"11","author":"Frank","year":"2014","journal-title":"Neurotherapeutics"},{"key":"10.3233\/JHD-220560_ref2","doi-asserted-by":"crossref","first-page":"c3109","DOI":"10.1136\/bmj.c3109","article-title":"Huntington\u2019s disease","volume":"340","author":"Novak","year":"2010","journal-title":"BMJ"},{"issue":"6","key":"10.3233\/JHD-220560_ref3","doi-asserted-by":"crossref","first-page":"998","DOI":"10.1212\/01.WNL.0000052992.58107.67","article-title":"Predictors of nursing home placement in Huntington disease","volume":"60","author":"Wheelock","year":"2003","journal-title":"Neurology"},{"issue":"2","key":"10.3233\/JHD-220560_ref4","doi-asserted-by":"crossref","first-page":"144","DOI":"10.1159\/000443738","article-title":"The prevalence of Huntington\u2019s disease","volume":"46","author":"Rawlins","year":"2016","journal-title":"Neuroepidemiology"},{"issue":"10","key":"10.3233\/JHD-220560_ref5","doi-asserted-by":"crossref","first-page":"1156","DOI":"10.1136\/jnnp-2012-304636","article-title":"Prevalence of adult Huntington\u2019s disease in the UK based on diagnoses recorded in general practice records","volume":"84","author":"Evans","year":"2013","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"3","key":"10.3233\/JHD-220560_ref6","doi-asserted-by":"crossref","first-page":"217","DOI":"10.3233\/JHD-170260","article-title":"Physical therapy and exercise interventions in Huntington\u2019s disease: a mixed methods systematic review","volume":"6","author":"Fritz","year":"2017","journal-title":"J Huntingtons Dis"},{"issue":"2","key":"10.3233\/JHD-220560_ref7","doi-asserted-by":"crossref","first-page":"207","DOI":"10.3233\/JHD-160192","article-title":"Health care delivery practices in Huntington\u2019s disease specialty clinics: an international survey","volume":"5","author":"Frich","year":"2016","journal-title":"J Huntingtons Dis"},{"key":"10.3233\/JHD-220560_ref8","doi-asserted-by":"crossref","first-page":"710","DOI":"10.3389\/fneur.2019.00710","article-title":"International guidelines for the treatment of Huntington\u2019s disease","volume":"10","author":"Bachoud-L\u00e9vi","year":"2019","journal-title":"Front Neurol"},{"issue":"1","key":"10.3233\/JHD-220560_ref9","doi-asserted-by":"crossref","first-page":"1","DOI":"10.2217\/nmt.11.85","article-title":"A standard of care for Huntington\u2019s disease: who, what and why","volume":"2","author":"Simpson","year":"2012","journal-title":"Neurodegen Dis Manage"},{"issue":"2-3","key":"10.3233\/JHD-220560_ref10","doi-asserted-by":"crossref","first-page":"175","DOI":"10.1016\/j.brainresbull.2006.10.027","article-title":"Comprehensive care in Huntington\u2019s disease","volume":"72","author":"Nance","year":"2007","journal-title":"Brain Res Bull"},{"key":"10.3233\/JHD-220560_ref11","unstructured":"Rosenblatt NG , Ranen G , Nance MA , Paulsen JS , editors. A Physician\u2019s Guide to the Management of Huntington Disease. New York (NJ): Huntington\u2019s Disease Society of America; 1999."},{"issue":"4-5","key":"10.3233\/JHD-220560_ref12","doi-asserted-by":"crossref","first-page":"192","DOI":"10.1016\/j.brainresbull.2009.06.017","article-title":"Coordinated multidisciplinary care for Huntington\u2019s disease","volume":"80","author":"Veenhuizen","year":"2009","journal-title":"An outpatient department. Brain Res Bull"},{"key":"10.3233\/JHD-220560_ref13","doi-asserted-by":"crossref","first-page":"31","DOI":"10.1016\/B978-0-12-801893-4.00003-1","article-title":"Epidemiology of Huntington disease","volume":"144","author":"Kay","year":"2017","journal-title":"Handb Clin Neurol"},{"issue":"1","key":"10.3233\/JHD-220560_ref14","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1111\/1467-9515.00322","article-title":"Health authorities, priority-setting and resource allocation: a study in decision-making in New Labour\u2019s NHS","volume":"37","author":"Greener","year":"2003","journal-title":"Social Policy Admin"},{"key":"10.3233\/JHD-220560_ref15","doi-asserted-by":"crossref","first-page":"297","DOI":"10.1016\/B978-0-12-381328-2.00013-4","article-title":"Huntington\u2019s disease: clinical presentation and treatment","volume":"98","author":"Novak","year":"2011","journal-title":"Int Rev Neurobiol"},{"issue":"6","key":"10.3233\/JHD-220560_ref16","doi-asserted-by":"crossref","first-page":"67","DOI":"10.3390\/brainsci7060067","article-title":"Neuropsychiatric burden in Huntington\u2019s disease","volume":"7","author":"Paoli","year":"2017","journal-title":"Brain Sci"},{"issue":"1","key":"10.3233\/JHD-220560_ref17","doi-asserted-by":"crossref","first-page":"76","DOI":"10.1186\/s13023-020-01664-6","article-title":"How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study","volume":"16","author":"Simpson","year":"2021","journal-title":"Orphanet J Rare Dis"},{"issue":"1","key":"10.3233\/JHD-220560_ref18","doi-asserted-by":"crossref","first-page":"64","DOI":"10.3390\/jpm12010064","article-title":"More than just a brain disorder: a five-point manifesto for psychological care for people with Huntington\u2019s disease","volume":"12","author":"Zarotti","year":"2022","journal-title":"J Pers Med"},{"key":"10.3233\/JHD-220560_ref19","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1016\/j.cortex.2019.06.012","article-title":"Validity of irritability in Huntington\u2019s disease: A scoping review","volume":"120","author":"Simpson","year":"2019","journal-title":"Cortex"},{"issue":"2","key":"10.3233\/JHD-220560_ref20","doi-asserted-by":"crossref","first-page":"161","DOI":"10.3390\/brainsci12020161","article-title":"Understanding the burdens associated with Huntington\u2019s disease in manifest patients and care partners\u2013comparing to Parkinson\u2019s disease and the general population","volume":"12","author":"Exuzides","year":"2022","journal-title":"Brain Sci"},{"issue":"6","key":"10.3233\/JHD-220560_ref21","doi-asserted-by":"crossref","first-page":"1145","DOI":"10.3390\/ijerph15061145","article-title":"The impact of austerity on mental health service provision: A UK Perspective","volume":"15","author":"Cummins","year":"2018","journal-title":"Int J Environ Res Public Health"},{"issue":"1","key":"10.3233\/JHD-220560_ref22","doi-asserted-by":"crossref","first-page":"27","DOI":"10.3233\/JHD-2012-120003","article-title":"The appointment of a Huntington\u2019s disease nurse specialist has reduced admission rate and improved admission quality","volume":"1","author":"Bourke","year":"2012","journal-title":"J Huntingtons Dis"},{"issue":"3","key":"10.3233\/JHD-220560_ref23","doi-asserted-by":"crossref","first-page":"137","DOI":"10.12968\/bjnn.2012.8.3.137","article-title":"Successful multidisciplinary team working: an evaluation of a Huntington\u2019s disease service","volume":"8","author":"Kenny","year":"2012","journal-title":"Br J Neurosci Nurs"},{"issue":"5","key":"10.3233\/JHD-220560_ref24","doi-asserted-by":"crossref","first-page":"214","DOI":"10.12968\/bjnn.2014.10.5.214","article-title":"Applying a healthcare model to Huntington\u2019s disease: the key worker approach","volume":"10","author":"Wilson","year":"2014","journal-title":"Br J Neurosci Nurs"},{"issue":"1","key":"10.3233\/JHD-220560_ref25","doi-asserted-by":"crossref","first-page":"64","DOI":"10.7861\/futurehosp.5-1-64","article-title":"Barriers and facilitators to integrating primary and specialist healthcare in the United Kingdom: a narrative literature review","volume":"5","author":"Kozlowska","year":"2018","journal-title":"Future Healthc J"}],"container-title":["Journal of Huntington's Disease"],"original-title":[],"link":[{"URL":"https:\/\/content.iospress.com\/download?id=10.3233\/JHD-220560","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T08:56:19Z","timestamp":1777452979000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/full\/10.3233\/JHD-220560"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,12,15]]},"references-count":25,"journal-issue":{"issue":"4"},"URL":"https:\/\/doi.org\/10.3233\/jhd-220560","relation":{},"ISSN":["1879-6397","1879-6400"],"issn-type":[{"value":"1879-6397","type":"print"},{"value":"1879-6400","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,12,15]]}}}