对年轻男孩患有影响性发育的疾病 (PRO-CSD) 的父母报告的结果措施的验证
Xanthippi Tseretopoulou1,2, Salma R Ali1,2, Melissa Gardner3
1Developmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK.
Archives of disease in childhood
|June 8, 2025
概括
这项研究验证了父母报告的影响性发育条件 (PRO-CSD) 调查问卷的结果. 该PRO-CSD工具是有用的查与健康相关的生活质量在男孩有条件影响性发展.
科学领域:
- 儿科内分泌学 儿科内分泌学
- 泌尿生殖系统医学
- 心理测量 心理测量 心理测量
背景情况:
- 影响性发展的条件 (CSD) 影响年轻男孩,需要验证的工具来评估与健康有关的生活质量.
- 父母报告的结果 (PROs) 对于在儿科医疗保健中捕捉患者和家庭的观点至关重要.
- 现有的PRO可能无法充分解决患有心脏病的儿童的具体问题.
研究的目的:
- 为了验证一个简短的,父母报告的结果问卷 (PRO-CSD) 对于CSD的年轻男孩.
- 评估PRO-CSD的心理测量特性,包括可靠性和有效性.
- 确定PRO-CSD对查与健康相关的生活质量的有用性.
主要方法:
- 一个连续的样本横截面研究在三级儿童医院进行.
- 98名患有CSD男孩的父母 (平均年龄为3.1岁) 完成了PRO-CSD,包括父母代理报告 (PPR) 和父母自我报告 (PSR) 组件.
- 使用类内相关系数 (ICC) 评估了测试重复测试的可靠性,并通过与人口统计和临床特征的关联探索了组构造的有效性.
主要成果:
- 该PRO-CSD表现出良好的测试重试可靠性,中位数ICC为0.8.
- 父母对生殖器的担忧与PSR上的外部男性化得分 (EMS) 有关 (p=0.01).
- 电力系统是整体PSR得分的重要独立决定因素,社会经济因素影响了PPR的担忧.
结论:
- PRO-CSD问卷表现出有利的心理测量特性,证实了它的实用性.
- 该工具有效地选了CSD男孩的父母报告的,特定条件的生活质量结果.
- 在这一群体中,PRO-CSD支持从父母的角度评估与健康有关的生活质量.
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