HCD Economics, Cheshire, England, UK.
Birmingham and Solihull Mental Health NHS Foundation Trust, Birmingham, England, UK.
J Huntingtons Dis. 2023;12(4):363-370. doi: 10.3233/JHD-220560.
Huntington's 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).
To understand the organization and resourcing of specialist HD services for people with HD (PwHD) in the UKMethods: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.
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.
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.
亨廷顿病（HD）是一种罕见的遗传性神经退行性疾病，其特征是随着病情的发展，需求复杂多变。目前，人们对英国（UK）HD 临床服务的组织及其资源配置了解有限。
了解英国 HD 患者（PwHD）的专科 HD 服务的组织和资源配置。
本横断面研究通过在线调查收集定量数据，并通过电话半结构式访谈收集定性数据。采用描述性统计方法描述定量结果，采用内容分析法分析定性结果。
共确定了 31 个 HD 专科服务。在完成在线调查的 27 个服务中，有 23 个有一个活跃的多学科医疗保健专业人员（HCP）团队，主要由心理健康信托（26%）或三级转诊医院（26%）领导。专科服务提供门诊诊所（96%）、社区外展（74%）、远程医疗（70%）、住院床位（26%）和卫星诊所（26%）。许多服务表示其能力（根据当前资源满足患者需求的能力）很困难，一些服务报告在 HD 的早期或晚期阶段更困难。确定了设施、HCP 和转诊网络方面的关键资源差距。
这项研究强调了个体 HD 服务内组织和能力的差异，以及当前资源配置和获取方面的差距，这些差距会影响服务能力。应该进一步研究，以了解服务组织和获取方面的差距对英国 PwHD 所提供的护理质量的影响。
