脊柱肌肉缩儿童的行为和情绪挑战
Lakshmi Balaji1, Didu S Kariyawasam1, Karen Herbert2
1Department of Neurology, Sydney Children's Hospital Randwick, Randwick, NSW, Australia; Discipline of Paediatrics and Child Health, School of Clinical Medicine, UNSW Medicine and Health, University of New South Wales, Sydney, NSW, Australia.
Pediatric neurology
|November 25, 2025
概括
脊柱肌缩 (SMA) 的儿童经常经历情绪和行为困难,影响日常生活. 早期心理健康查和支持对于优化这些患者的治疗结果至关重要.
科学领域:
- 神经学 神经学
- 儿科 儿科 儿科
- 遗传学 是一个遗传学.
背景情况:
- 疾病修饰疗法改变了脊髓肌肉缩 (SMA) 的进展,突出了了解其多系统效应的必要性.
- 在SMA患者中,认知和情绪过程越来越被认为受到影响.
研究的目的:
- 确定症状性SMA儿童的行为和情绪问题的患病率.
- 描述这些儿童的特定情绪和行为特征.
主要方法:
- 一个单中心的横截面研究,涉及48名患有症状的SMA的4-17岁儿童.
- 通过强项和困难问卷 (SDQ) 评估了情绪和行为问题.
- 收集了临床数据和生活质量结果 (儿科生活质量神经肌肉模块).
主要成果:
- 35.4%的SMA儿童在SDQ上表现出困难,明显高于一般人口 (10%).
- 60.4%的人至少在一个SDQ领域遇到困难,25%的人遇到过度活跃,情绪调节和行为问题.
- 33.3%的家长认为情绪/行为困难是一种负担,并与较低的生活质量有关.
结论:
- 患有SMA的儿童在所有运动功能水平上表现出显著的情绪和行为失调,对日常生活产生负面影响.
- 这些挑战仍然存在,尽管疾病的严重程度和治疗的进展各不相同.
- 建议进行常规的心理健康监测和心理支持,以早期识别和干预,以改善健康结果.
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