Usage of support services in primary lateral sclerosis.
Usage of support services in primary lateral sclerosis.
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在原发性侧索硬化症中使用支持服务。
DOI：
10.1080/17482960902818224
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发表时间：
2009
期刊：
影响因子：
--
通讯作者：
Floeter,MaryKay
中科院分区：
文献类型：
--
作者：
Peters,TracyL;Floeter,MaryKay
肌萎缩性侧索硬化症（ALS）患者在疾病过程中依赖于各种支持服务。原发性侧索硬化（PLS）患者病程进展较慢，临床表现不同。他们对联合保健服务和社会支持的需求尚未得到很好的描述。为了调查这些需求，我们调查了25名PLS患者和护理人员对辅助设备和支持服务的使用情况。随着病情的发展，对援助的需求也发生了变化。他们最大的需求是步态辅助设备和需要移动活动的家庭帮助。与其他慢性疾病一样，互联网在收集信息和为患者支持团体提供服务方面的应用非常广泛。
Patients with amyotrophic lateral sclerosis (ALS) rely on a variety of support services during the course of their illness. Patients with primary lateral sclerosis (PLS) have a slower progression of disease and different clinical spectrum. Their needs for allied health services and social support have not been well characterized. To investigate these needs, 25 patients with PLS and caregivers were surveyed on the use of assistive devices and support services. Needs for assistance changed as the disease progressed. Their greatest need was for gait-assistive devices and home help for activities requiring mobility. As in other chronic diseases, there was a striking use of the internet to gather information and for patient support groups.