综合性先天性关节炎 (AMC) 和怀孕前和怀孕期间的咨询:一个调查问卷研究
Arda Arduç1,2, Julia Slootbeek3,4, Johanna I P de Vries3,4
1Department of Obstetrics and Gynaecology, Amsterdam UMC, University of Amsterdam, Meibergdreef 9, 1105 AZ, Amsterdam, the Netherlands. a.arduc@amsterdamumc.nl.
Orphanet journal of rare diseases
|July 27, 2025
概括
患有多重先天性关节位症 (AMC) 的女性希望从18岁开始接受怀孕前咨询. 他们更喜欢多学科的团队方法,以提供量身定制的生殖护理.
科学领域:
- 生殖健康 生殖健康
- 遗传学和肌肉骨系统疾病
- 以患者为中心的护理
背景情况:
- 对于患有关节形多重性先天性 (AMC) 的女性,怀孕前咨询并不是标准实践.
- 关于AMC和怀孕的现有文献是有限的,尽管许多受影响的个人生活独立并有孩子.
- 这项研究通过探索AMC妇女在生殖健康方面的经验和偏好来解决这一差距.
研究的目的:
- 收集来自AMC妇女的关于她们怀孕和分娩经历的信息.
- 确定优化怀孕前,怀孕和育儿咨询和指导的偏好.
- 为 AMC 的妇女提供量身定制的生殖健康保健的发展提供信息.
主要方法:
- 在确诊AMC的妇女中进行了一项匿名问卷研究.
- 参与者通过国际AMC患者支持小组和加拿大登记处通过通讯和社交媒体招募.
- 收集的数据包括怀孕史,分娩经历,以及对咨询的偏好.
主要成果:
- 53名患有AMC的妇女参加了这项研究;64.2%的妇女报告怀孕,导致45名儿童 (没有患有AMC).
- 95.7%的受访者表示强烈希望获得标准的怀孕前咨询.
- 首选的辅导情况包括从18岁开始,涉及妇科医生和伴侣,并利用多学科团队和同行支持.
结论:
- 患有AMC的妇女强调需要量身定制的生殖健康护理和怀孕前咨询.
- 强烈建议从18岁开始实施妊娠前咨询,由多学科团队提供.
- 纳入患者的观点对于改善生殖保健和解决有关医疗保健提供者的知识和护理连续性的担忧至关重要.
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