ObjectiveTo examine parental experiences during pregnancies affected by Arthrogryposis Multiplex Congenita (AMC) by identifying commonalities, risk factors, and areas for improvement in detection rates, care protocols, and patient experience.Study DesignAn online survey was distributed via AMC support groups on Facebook. Topics included demographics, risk factors, parental recall of sonographic findings, delivery characteristics and neonatal findings. Responses were divided into antenatally detected cases (ADCs) and postnatally detected cases (PDCs). Quantitative responses were analyzed with the Fisher exact test. Qualitative data were analyzed with thematic analysis.ResultsThe antenatal detection rate of arthrogryposis was 37%. Decreased fetal movement was reported by 53% and early bleeding by 21%. Sonographic findings in ADCs included clubfoot (83%), clenched hand (51%), decreased fetal movement (50%), elbow contracture (51%), and knee contracture (46%). Among ADCs, 29% delivered vaginally and 71% delivered by cesarean versus PDCs (44% vaginal, 56% cesarean). Neonatal intensive care unit admission rate was 63%. Bone fracture occurred in 9%. Detection led to a planned change in delivery mode in 33% and location in 50%. Among ADCs, 17% felt their concerns were not adequately addressed versus 43% of PDCs.ConclusionsAntenatal detection of arthrogryposis was low. We propose enhanced screening criteria to aid prenatal diagnosis and promote utilization of more robust practice guidelines.

中文翻译：

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先天性多发性关节弯曲的产前诊断（或缺乏诊断）及其对父母围产期经历的影响：回顾性调查

目的 通过确定共性、危险因素以及检出率、护理方案和患者体验方面需要改进的领域，研究受先天性多发性关节弯曲 (AMC) 影响的父母在怀孕期间的经历。研究设计通过 Facebook 上的 AMC 支持小组分发了一项在线调查。主题包括人口统计、危险因素、家长对超声检查结果的回忆、分娩特征和新生儿检查结果。反应分为产前检测病例（ADC）和产后检测病例（PDC）。使用 Fisher 精确检验分析定量响应。定性数据与专题分析相结合。结果关节挛缩产前检出率为37%。据报告，胎动减少了 53%，早期出血减少了 21%。 ADC 的超声检查结果包括马蹄内翻足 (83%)、紧握的手 (51%)、胎动减少 (50%)、肘部挛缩 (51%) 和膝部挛缩 (46%)。在 ADC 中，29% 是阴道分娩，71% 是剖腹产，而 PDC 是剖腹产（44% 是阴道分娩，56% 是剖腹产）。新生儿重症监护室入住率为63%。 9%发生骨折。检测导致 33% 的人计划改变配送方式，50% 的人计划改变地点。在 ADC 中，17% 的人认为他们的担忧没有得到充分解决，而 PDC 中的这一比例为 43%。 结论 产前关节挛缩的检出率较低。我们建议加强筛查标准，以帮助产前诊断并促进使用更强有力的实践指南。