亨廷顿舞蹈症的社会成本：我们是否低估了其负担？
The societal cost of Huntington's disease: are we underestimating the burden?
作者信息
Jones C, Busse M, Quinn L, Dawes H, Drew C, Kelson M, Hood K, Rosser A, Edwards R T
机构信息
Centre for Health Economics and Medicines Evaluation, Bangor University, Bangor, UK.
South East Wales Trials Unit, Cardiff University, Cardiff, UK.
出版信息
Eur J Neurol. 2016 Oct;23(10):1588-90. doi: 10.1111/ene.13107. Epub 2016 Jul 27.
BACKGROUND AND PURPOSE
Approximately 9000 people in the UK are affected by Huntington's disease (HD). People with HD require ongoing health and social care support. There is a knowledge gap about costs of health and social care use associated with HD in the UK. This paper estimates the economic cost in the UK.
METHODS
Data on UK patients for the year 2013 were extracted from the European Huntington's Disease Network REGISTRY study, a full clinical dataset, including the full medical history and medication history for patients with HD. National unit costs for the price year 2013 were applied to health and social care services.
RESULTS
Data were available for 131 people. The mean annual cost per person with HD was £21 605. The largest proportion of this cost (65%) was due to informal care (£14 085).
CONCLUSIONS
Informal care was the largest driver of costs across all stages of HD; thus there is a need to also consider the needs of carers when planning services for people with HD.
背景与目的
在英国，约有9000人受亨廷顿舞蹈症（HD）影响。HD患者需要持续的健康和社会护理支持。在英国，关于与HD相关的健康和社会护理使用成本存在知识空白。本文估算了英国的经济成本。
方法
2013年英国患者的数据取自欧洲亨廷顿舞蹈症网络登记研究，这是一个完整的临床数据集，包括HD患者的完整病史和用药史。2013年价格年度的国家单位成本应用于健康和社会护理服务。
结果
有131人的数据可用。HD患者人均年成本为21605英镑。该成本的最大部分（65%）归因于非正式护理（14085英镑）。
结论
非正式护理是HD各个阶段成本的最大驱动因素；因此，在为HD患者规划服务时，也需要考虑护理人员的需求。
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