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The educational programs for extrapyramidal disease and spinocerebellar degeneration patients and their families
Author(s) -
Oki Takeshi,
Sugawara Naohiko,
Haruta Hiroyuki,
Takanashi Jyunichi
Publication year - 2019
Publication title -
neurology and clinical neuroscience
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.125
0ISSN - 2049-4173
DOI - 10.1111/ncn3.12262
Subject(s) - medicine , dysarthria , vitality , parkinsonism , quality of life (healthcare) , disease , dysphagia , degeneration (medical) , physical disability , physical therapy , gerontology , psychiatry , pathology , philosophy , theology , nursing , surgery
Background Extrapyramidal disease and spinocerebellar degeneration patients and their families have less information about their diseases, which deteriorate the quality of life of these patients and increase the burdens on their families. Aim We designed our study for the purpose of improving the quality of life of these patients and decreasing the burdens on their families by giving enough information to them. Methods We conducted educational programs for these patients and their families, consisting of lectures on the symptoms and courses of the diseases, rehabilitation, social support, dysarthria, and dysphagia. To evaluate the efficacy of our programs, we administered the 36‐Item Short‐Form Health Survey to the patients and the Zarit Burden Interview to their families both before and after these programs. Results Thirty‐three patients joined our programs with their families. Of these, 22 had Parkinson's disease, four had progressive supranuclear palsy, four had multiple system atrophy, two had spinocerebellar degeneration, and one had undiagnosed parkinsonism. The Physical Component Summary, the Mental Component Summary, the Role‐social Component Summary scores of the 36‐Item Short‐Form Health Survey, and the scores of the Zarit Burden Interview before and after the programs were 33.4 and 87.7, 55.5 and 48.5, 30.6 and 30.8, and, 19.7 and 19.1, respectively. There was no significant difference in Zarit Burden Interview and the 36‐Item Short‐Form Health Survey other than the subscales of physical functioning and vitality. Conclusions Our programs could not improve the quality of life of the patients and could not also reduce the burdens on their families.