关于儿童运动障碍神经调节的患者教育材料的内容和可读性
Jamie M Barnacoat1, Jennifer Lewis2, Kirsty Stewart2,3
1Kids Neuroscience Center, Children's Hospital at Westmead, Sydney, Australia.
Disability and rehabilitation
|September 9, 2024
概括
对于儿科深度脑刺激 (DBS) 和内巴克洛芬 (ITB) 的在线患者教育材料往往缺乏全面的细节,并且可读性差. 提高内容的可访问性和平衡风险-益处信息对于这些神经调节治疗来说至关重要.
科学领域:
- 神经调节是一种神经调节.
- 儿科神经治疗学 儿科神经治疗学
- 医学教育 医学教育
背景情况:
- 在线患者教育材料 (PEMs) 对于向患者提供有关复杂神经外科手术程序的信息至关重要.
- 深度大脑刺激 (DBS) 和内巴克洛芬 (ITB) 是对儿科神经疾病的先进治疗方法.
- 评估当前PEM的质量和可访问性对于患者的理解和知情同意至关重要.
研究的目的:
- 评估儿科DBS和ITB在线PEM的内容全面性和可读性.
- 为了确定向接受这些神经调节疗法的患者提供的信息中的差距.
主要方法:
- 来自领先的儿童医院和设备制造商的109个PEM的内容分析.
- 使用预定义框架对内容的评估.
- 使用Gobbledygook (SMOG) 的简单测量指数进行可读性评估.
主要成果:
- 大多数PEM (71%) 来自美国;ITB材料更有可能包括儿科特定信息 (73%) 比DBS (22%).
- 福利往往是详细的 (DBS 92%,ITB 89%),而风险的覆盖不那么一致 (DBS 49%,ITB 78%).
- 可读性得分显示,DBS的平均分数为13.2,ITB的平均分数为11.8,这表明患者的整体理解能力面临挑战.
结论:
- 对于儿科DBS和ITB的现有PEM通常缺乏关键细节,并表现出低于最佳的可读性.
- 显著需要更全面,更容易获取的内容,提供一个平衡的风险和收益的观点.
- 提高神经调节PEM的质量对于提高患者教育和共享决策至关重要.
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