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日本2型脊髓性肌萎缩症患者喂养问题调查。

Survey of feeding issues experienced by patients with spinal muscular atrophy type 2 in Japan.

作者信息

Uchio Yuu, Ikai Tetsuo

机构信息

Department of Rehabilitation, Tokyo Women's Medical University, Japan.

Present affiliation: Department of Physical Therapy, School of Health Sciences, Tokyo International University: 1-13-1 Matobakita, Kawagoe-shi, Saitama 350-1197, Japan.

出版信息

J Phys Ther Sci. 2025 Jun;37(6):270-273. doi: 10.1589/jpts.37.270. Epub 2025 Jun 1.

Abstract

[Purpose] This study aimed to clarify the eating difficulties experienced by patients with spinal muscular atrophy type 2 in Japan. [Participants and Methods] This cross-sectional study was part of a larger survey of Japanese patients with spinal muscular atrophy that included the use of a questionnaire. The feeding questionnaire was developed by a medical professional and validated before survey administration. Of 221 patients who completed and returned the questionnaire, 62 had spinal muscular atrophy type 2. The average age of the study patients was 17.6 years (± 11.7 years). To identify feeding problems experienced by patients with spinal muscular atrophy type 2 by age, the participants were divided into the following three groups: 0-11 years, 12-19 years, and 20 years or older. [Results] The frequency of choking episodes during meals in Japanese patients with type 2 spinal muscular atrophy was 66.1% and increased with age. [Conclusion] Ongoing swallowing evaluation and feeding instructions are necessary for patients with spinal muscular atrophy type 2.

摘要

[目的] 本研究旨在阐明日本2型脊髓性肌萎缩症患者所经历的进食困难。[参与者与方法] 这项横断面研究是对日本脊髓性肌萎缩症患者进行的一项更大规模调查的一部分,该调查包括使用问卷调查。喂养问卷由一名医学专业人员编制,并在调查实施前进行了验证。在221名完成并返回问卷的患者中,62名患有2型脊髓性肌萎缩症。研究患者的平均年龄为17.6岁(±11.7岁)。为了按年龄确定2型脊髓性肌萎缩症患者所经历的喂养问题,参与者被分为以下三组:0 - 11岁、12 - 19岁和20岁及以上。[结果] 日本2型脊髓性肌萎缩症患者进餐时呛咳发作的频率为66.1%,且随年龄增加。[结论] 对于2型脊髓性肌萎缩症患者,持续的吞咽评估和喂养指导是必要的。

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Feeding problems and malnutrition in spinal muscular atrophy type II.II型脊髓性肌萎缩症中的喂养问题与营养不良
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本文引用的文献

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Epidemiological investigation of spinal muscular atrophy in Japan.日本脊髓性肌肉萎缩症的流行病学调查。
Brain Dev. 2022 Jan;44(1):2-16. doi: 10.1016/j.braindev.2021.08.002. Epub 2021 Aug 25.
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Spinal muscular atrophies.脊髓性肌萎缩症
Pediatr Clin North Am. 2015 Jun;62(3):743-66. doi: 10.1016/j.pcl.2015.03.010. Epub 2015 Apr 11.

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