title: Usage of support services in primary lateral sclerosis.
abstract: 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.
authors.affiliation: Human Spinal Physiology Unit, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Tracy L
authors.initials: TL
authors.lastname: Peters
authors.forename: Mary Kay
authors.initials: MK
authors.lastname: Floeter
mesh_terms: D017028:Caregivers / Q000706:statistics & numerical data*; D017281:Cost of Illness; D005260:Female; D006296:Health Services / Q000706:statistics & numerical data*; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000503:physiopathology / Q000523:psychology; D012657:Self-Help Groups / Q000706:statistics & numerical data*; D012944:Social Support; D011795:Surveys and Questionnaires