青少年风湿病患者的生殖健康知识和偏好:一个融合的混合方法研究研究
Acela C Rosado1, Josheili Llavona-Ortiz2, Lisabeth V Scalzi3
1Department of Pediatrics, Division of Rheumatology, Penn State Children's Hospital and Penn State College of Medicine, Hershey, PA, 17033, USA. rosado2014@gmail.com.
Pediatric rheumatology online journal
|November 11, 2025
概括
患有风湿性疾病的女性青少年对性和生殖健康的了解有限,特别是在怀孕和药物安全方面. 他们从医疗保健提供者那里寻求更多的信息,以提高他们的理解和结果.
科学领域:
- 生殖健康 生殖健康
- 类风湿病学 类风湿病学
- 青少年医学 青少年医学
背景情况:
- 现有的性生殖健康 (SRH) 准则主要针对患有风湿性疾病 (RDs) 的成年人,并没有解决具有独特SRH需求的青少年.
- 儿科风湿病提供者认识到SRH讨论的重要性,但青少年患者中仍然存在特定的知识差距.
- 患有全身性红斑狼 (SLE),未分化结缔组织疾病 (UCTD),混合结缔组织疾病 (MCTD) 或重叠疾病的青少年面临着不利SRH结果的风险增加.
研究的目的:
- 探索被诊断患有SLE,UCTD,MCTD或重叠疾病的女性青少年的性和生殖健康 (SRH) 知识和信息来源.
- 确定这个脆弱的青少年群体面临的具体的SRH挑战和问题.
- 为发展针对性SRH干预和指导方针的青少年与类风湿病的情况提供信息.
主要方法:
- 一项融合混合方法研究,涉及调查和半结构面试,对15至21岁的女青少年进行调查.
- 参与者从宾夕法尼亚州中央医疗保健系统中招募,患有SLE,UCTD,MCTD或重叠疾病,接受儿科风湿病学家的护理.
- 使用描述性统计和曼-惠特尼U测试分析了定量数据; 定性数据进行了主题分析,结果以联合显示方式呈现.
主要成果:
- 调查和采访显示,参与者对SRH概念,怀孕影响和药物安全性的理解有限.
- 使用原药物的青少年与不使用这些药物的青少年相比,SRH知识得分较低.
- 参与者对疾病与怀孕的相互作用表示担忧,并确定了SRH信息的各种来源,通常与医疗保健无关.
结论:
- 在患有特定类风湿性疾病的女性青少年中,SRH知识存在显著的差距,需要有针对性的教育干预.
- 许多青少年依靠非临床来源获取SRH信息,但表示希望与他们的医疗保健提供者进行直接讨论.
- 进一步扩展到其他类风湿病和男性群体的研究对于开发全面的SRH工具和指导方针至关重要,以改善患者的治疗结果.
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