Peters Tracy L, Floeter Mary Kay
Human Spinal Physiology Unit, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
Amyotroph Lateral Scler. 2009 Jun;10(3):187-91. doi: 10.1080/17482960902818224.
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.
肌萎缩侧索硬化症（ALS）患者在患病过程中依赖多种支持服务。原发性侧索硬化症（PLS）患者的疾病进展较慢且临床谱不同。他们对联合健康服务和社会支持的需求尚未得到充分描述。为了调查这些需求，对25名PLS患者及其护理人员就辅助设备和支持服务的使用情况进行了调查。随着疾病的进展，援助需求发生了变化。他们最需要的是步态辅助设备以及针对需要行动能力的活动的居家帮助。与其他慢性病一样，患者大量使用互联网来收集信息和加入患者支持小组。
