成年脊髓性肌萎缩症患者健康相关生活质量的相关因素
Correlates of health related quality of life in adult patients with spinal muscular atrophy.
作者信息
Kruitwagen-Van Reenen Esther Th, Wadman Renske I, Visser-Meily Johanna Ma, van den Berg Leonard H, Schröder Carin, van der Pol W Ludo
机构信息
Departments of Rehabilitation, Nursing Science and Sports, Brain Centre Rudolf Magnus, University Medical Centre Utrecht, Postbus 85500, 3508 GA, Utrecht, The Netherlands.
Department of Neurology and Neurosurgery, Brain Centre Rudolf Magnus, University Medical Centre Utrecht, Utrecht, The Netherlands.
出版信息
Muscle Nerve. 2016 Nov;54(5):850-855. doi: 10.1002/mus.25148. Epub 2016 Sep 21.
INTRODUCTION
To improve care for patients with spinal muscular atrophy (SMA), we assessed the physical and mental quality of life (QoL) in 62 adult patients with SMA.
METHODS
Physical component scores (PCS) and mental component scores (MCS) of the Short Form-36 Health Survey (SF-36) were obtained. Correlations with demographics, disease severity, and emotional distress were assessed. We used hierarchical multiple regression analysis to identify determinants of QoL.
RESULTS
PCS scores were lower, and MCS scores higher than in the healthy reference population. Patients with milder SMA types reported lower scores on several MCS domains. Motor skills scores and emotional distress explained 16% of the variance in PCS. SMA type and emotional distress explained 10% and 45% of the variance of MCS, respectively.
CONCLUSIONS
Patients with milder forms of SMA tend to have a reduced mental QoL. Psychological interventions to reduce emotional distress may improve both mental and physical QoL. Muscle Nerve 54: 850-855, 2016.
引言
为改善脊髓性肌萎缩症（SMA）患者的护理，我们评估了62例成年SMA患者的生理和心理生活质量（QoL）。
方法
获取简短健康调查问卷（SF-36）的生理成分得分（PCS）和心理成分得分（MCS）。评估其与人口统计学、疾病严重程度及情绪困扰的相关性。我们采用分层多元回归分析来确定生活质量的决定因素。
结果
PCS得分低于健康对照人群，而MCS得分高于健康对照人群。症状较轻的SMA类型患者在多个MCS领域得分较低。运动技能得分和情绪困扰解释了PCS变异的16%。SMA类型和情绪困扰分别解释了MCS变异的10%和45%。
结论
症状较轻的SMA患者往往心理生活质量较低。减轻情绪困扰的心理干预可能会改善心理和生理生活质量。《肌肉与神经》54: 850 - 855, 2016年。
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