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首页> 外文期刊>European journal of paediatric neurology: EJPN : official journal of the European Paediatric Neurology Society >Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom.
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Hospice provision and usage amongst young people with neuromuscular disease in the United Kingdom.

机译：在英国患有神经肌肉疾病的年轻人中，临终关怀的提供和使用。

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摘要

AIM: To identify the nature of services for children and young people with progressive neuromuscular disorders (NMD) provided by Children's Hospices in the UK. METHODS: A questionnaire requesting aggregate data on the number of patients with a neuromuscular condition was sent to all children's hospices in the UK, in addition, specific data was collected on services for young people with DMD presenting to a single local hospice. RESULTS: 87% of eligible hospices responded (27/31). 756 young people with an NM condition were being cared for by the hospices. These patients accounted for a mean of 17% of the total hospice population (range 5-35%). The age at which young people were required to leave the children's hospices varied from 18 up to 35 years. 73% of 'visits' were described as 'planned stays'. Although 'end of life care' is provided, few young people with NMD died in a hospice. CONCLUSIONS: Children and young people with NMD form a large proportion of the Children's Hospice's caseload. Many valued services provided by children's hospices are not available through NHS funding. The lack of similar adult based services is a concern as increasing numbers of young people are surviving into adulthood.
机译：目的：确定英国儿童收容所为儿童和青少年进行性神经肌肉疾病（NMD）提供服务的性质。方法：向英国的所有儿童收容所发送了一份问卷，要求收集有关神经肌肉疾病患者人数的汇总数据，此外，还收集了针对在当地一家临终关怀医院接受DMD年轻人服务的具体数据。结果：87％的符合条件的安宁收容所得到了回应（27/31）。收容所照顾了756名患有NM病的年轻人。这些患者平均占临终关怀总人数的17％（范围为5-35％）。年轻人被要求离开儿童收容所的年龄从18岁到35岁不等。 73％的“访问”被描述为“计划中的停留”。尽管提供了“临终关怀”，但很少有NMD的年轻人死于临终关怀。结论：患有NMD的儿童和年轻人占儿童临终关怀案件的大部分。 NHS资助无法提供儿童收容所提供的许多有价值的服务。随着越来越多的年轻人幸存成年，缺乏类似的成人服务令人担忧。

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