Department of Public Health and Primary care, Leiden University Medical Center, Hippocratespad 21, 2333 ZD, Leiden, the Netherlands.
Huntington Center of Expertise Topaz Overduin, Nachtegaallaan 5, 2225 SX, Katwijk, the Netherlands.
BMC Palliat Care. 2023 May 3;22(1):54. doi: 10.1186/s12904-023-01171-y.
As Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.
To review the literature focusing on palliative care in advanced stage HD, and the level of evidence.
Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute.
Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).
To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.
亨廷顿病（HD）是一种进行性疾病，目前尚无治愈方法，因此处于疾病晚期的患者可能受益于姑息治疗。
回顾重点关注晚期 HD 姑息治疗的文献，并评估其证据水平。
纳入了 1993 年至 2021 年 10 月 29 日 8 个数据库（Embase、Web of Science、Cochrane、Emcare、PsycINFO、Academic Search Premier、PMC PubMed Central 和 Pubmed）中的文献。文献根据姑息治疗定义的主题或从文献中出现的护理相关主题进行演绎分类。证据水平 I（高）-V（低）按照 Joanna Briggs 研究所的定义确定。
我们的搜索结果得到 333 篇文章，其中 38 篇被纳入。文献涵盖姑息治疗的四个领域：身体护理、心理护理、精神护理和社会护理。文献中的其他四个主题是：预先护理计划、临终需求评估、儿科 HD 护理和医疗保健服务需求。除了关于社会关怀（III-V 级）、预先护理计划（II-V 级）和临终需求评估（II-III 级）的主题外，大多数文献的证据水平都较低。
为了在晚期 HD 中提供充分的姑息治疗，需要解决一般和 HD 特异性症状和问题。鉴于现有文献的证据水平较低，需要进一步研究以改善姑息治疗，满足患者的意愿和需求。
