School of Physiotherapy, University of Notre Dame Australia, PO Box 1225, Fremantle, Western Australia 6959 Australia.
Telethon Kids Institute, Roberts Rd, Subiaco, Western Australia 6008 Australia; School of Physiotherapy and Exercise Science, Curtin University, Kent Street, Bentley, Western Australia 6102 Australia.
Neuromuscul Disord. 2019 Jan;29(1):48-58. doi: 10.1016/j.nmd.2018.08.013. Epub 2018 Sep 13.
The physical and social challenges associated with neuromuscular disorders may impact mental wellbeing in non-ambulant youth during the more vulnerable period of adolescence. This cross-sectional survey investigated non-ambulant youths' mental wellbeing and relationships with physical health, participation and social factors. The conceptual model was the International Classification of Functioning, Disability and Health (ICF). Thirty-seven youth aged 13-22 years old (mean age 17.4 years; n = 30 male; n = 24 Duchenne Muscular Dystrophy) and their parents provided biopsychosocial data through a comprehensive self-report questionnaire. The primary outcome measure was the Warwick Edinburgh Mental Wellbeing Scale (WEMWBS). Relationships between mental wellbeing and variables within and across each ICF domain were explored using linear regression models. Mean WEMWBS scores (55.3/70 [SD 8.1]) were higher than for typically developing youth and comparable to youth with other chronic conditions. Over half of youth reported severe co-morbidities across all body systems. Multivariable modelling indicated that mental wellbeing was independently associated with academic achievement and perceived family support but not with physical health variables. Beyond management of physical co-morbidities, enabling youths' educational attainment and attending to social support likely optimises youth's wellbeing.
与神经肌肉疾病相关的身体和社会挑战可能会在青春期这个更脆弱的时期影响非运动障碍青少年的心理健康。这项横断面调查研究了非运动障碍青少年的心理健康及其与身体健康、参与和社会因素的关系。理论模型是《国际功能、残疾和健康分类》（ICF）。37 名年龄在 13-22 岁（平均年龄 17.4 岁；男性 30 名；Duchenne 肌营养不良症 24 名）的青少年及其父母通过全面的自我报告问卷提供了生物心理社会数据。主要结局指标是华威爱丁堡心理健康量表（WEMWBS）。使用线性回归模型探讨了心理健康与 ICF 各领域内和跨领域变量之间的关系。平均 WEMWBS 评分（55.3/70 [SD 8.1]）高于一般发展中的青少年，与其他慢性疾病的青少年相当。超过一半的青少年报告所有身体系统都有严重的合并症。多变量模型表明，心理健康与学业成绩和感知到的家庭支持独立相关，但与身体健康变量无关。除了管理身体合并症外，还应关注青少年的教育程度和社会支持，这可能会优化他们的幸福感。
