导航成年期:探索受杜恩或贝克尔肌肉衰竭影响的青少年和年轻成年人的过渡需求
Sharon Barak1,2, Shirley Ackerman Laufer3, Michal Gudinsky Elyashiv3
1Department of Nursing, School of Health Sciences, Ariel University, Ariel, Israel.
PloS one
|January 14, 2025
概括
患有杜恩或贝克尔肌肉发育不良症的人需要更多的独立支持. 关键的挑战包括教育,就业和日常活动,不论年龄或职能,都需要帮助.
科学领域:
- 神经学 神经学
- 康复医学 康复医学 康复医学
- 社会学 社会学 社会学
背景情况:
- 杜恩和贝克尔肌肉发育不良 (DMD/BMD) 对成年人的过渡期构成重大挑战.
- 医疗过渡是优先考虑的,但独立性和日常生活方面往往被忽视.
研究的目的:
- 评估DMD/BMD患者在多个生活领域的过渡需求.
- 确定影响该人口成年期准备程度的因素.
主要方法:
- 这是一项涉及42名患有DMD/BMD的男性的横截面研究.
- 用DMD问卷对年轻成年人进行过渡准备评估.
- 使用斯皮尔曼相关性和多重回归分析数据.
主要成果:
- 大多数参与者需要在教育/就业 (52.5%) 和日常生活活动 (57.0%) 中得到帮助.
- 确定了对息治疗,就业/教育支持,住房援助和辅助设备咨询的高度需求.
- 兄弟姐妹的数量与预测的过渡准备正相关;年龄较大预测只有教育/就业状况.
结论:
- 对于患有DMD/BMD的人来说,日常生活活动和教育/就业是最具挑战性的过渡领域.
- 在大多数领域所需的帮助并没有随着年龄的增长而减少,也没有随着功能改善而改善.
- 更多的兄弟姐妹与更好地为成人过渡做好准备有关.
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