Calvary Health Care Bethlehem, Melbourne, Australia.
BMC Palliat Care. 2021 Apr 1;20(1):53. doi: 10.1186/s12904-021-00744-z.
Huntington's Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage HD admitted to our Neuro-Palliative Care service.
We present the case of a patient with a 16-year history of HD from time of initial genetic testing to admission to our Neuro-Palliative Care service with late-stage disease.
Given the prolonged, fluctuating and heterogenous HD trajectory, measures need to be implemented to improve earlier access to multi-specialty integrative palliative care services. Given the good outcomes of our case, we strongly advocate for the role of specialised Neuro-Palliative Care services to bridge the gap between clinical need and accessibility.
亨廷顿病（HD）是一种无法治愈的进行性神经退行性疾病。对于 HD 患者来说，获得姑息治疗服务的机会有限，在澳大利亚，专门的神经姑息治疗服务也很少。我们讨论了一位晚期 HD 患者入住我们的神经姑息治疗服务的经历和获益。
我们介绍了一位患者的病例，该患者从最初的基因检测到晚期疾病入院到我们的神经姑息治疗服务，已有 16 年的 HD 病史。
鉴于 HD 病程漫长、波动且异质，需要采取措施改善多专业综合姑息治疗服务的早期获得。鉴于我们病例的良好结果，我们强烈主张专门的神经姑息治疗服务的作用，以弥合临床需求和可及性之间的差距。
