Joyce C M, Coulter J, Kenneally C, McCarthy T V, O'Donoghue K
Department of Obstetrics & Gynaecology, Cork University Maternity Hospital, Ireland; Department of Biochemistry & Cell Biology, University College Cork, Ireland; Pregnancy Loss Research Group, The Irish Centre for Maternal and Child Health Research (INFANT), University College Cork, Ireland; Department of Clinical Biochemistry, Cork University Hospital, Ireland.
Department of Obstetrics & Gynaecology, Cork University Maternity Hospital, Ireland.
Eur J Obstet Gynecol Reprod Biol. 2022 May;272:206-212. doi: 10.1016/j.ejogrb.2022.03.039. Epub 2022 Mar 28.
Gestational Trophoblastic Disease (GTD) is a rare pregnancy related disorder and the most curable of all gynaecological malignancies. GTD comprises the premalignant conditions of complete or partial hydatidiform mole known as molar pregnancy and a spectrum of malignant disorders termed gestational trophoblastic neoplasia. Clinical management and treatment in specialist centres is essential to achieve high cure rates and clinical guidelines recommend registration with a GTD centre as a minimum standard of care. National GTD registries are valuable repositories of epidemiological data and facilitate clinical audit, centralised pathology review and human chorionic gonadotropin (hCG) monitoring. This study sought the opinion of women enrolled on the Irish National GTD registry to inform future service development and establish a knowledge base for molar pregnancy in Ireland.
A cross-sectional survey using an anonymised questionnaire was distributed by post to all women on the GTD registry. The questionnaire was designed by a multidisciplinary team and consisted of twenty-five closed-ended questions and two open-ended questions to facilitate feedback. Data collected in the survey included information on the patient experience of registration, knowledge of molar pregnancy, diagnosis at their local hospital, hCG monitoring and overall satisfaction with the service.
The survey had a successful participation rate of 42.6% (215/504). Forty-nine percent (n = 106) of respondents rated a rapid hCG result as their top priority. Forty percent (n = 84) of women had concerns about future pregnancies but acknowledged that these were largely addressed by the GTD specialist nurses. A quarter of respondents reported that other medical professionals with whom they interacted during follow-up treatment did not understand their condition. Many women commented on the emotional stress of attending their local maternity unit for phlebotomy while dealing with pregnancy loss.
This study is unique in being the first survey of women on the Irish National GTD registry. It highlights the specific needs of women with molar pregnancy in terms of psychological support, bereavement counselling and peer support groups. It reveals a knowledge gap in molar pregnancy amongst healthcare professionals which should be considered in future planning of medical and nursing curricula.
妊娠滋养细胞疾病（GTD）是一种罕见的妊娠相关疾病，也是所有妇科恶性肿瘤中最可治愈的疾病。GTD包括被称为葡萄胎妊娠的完全性或部分性葡萄胎的癌前病变，以及一系列被称为妊娠滋养细胞肿瘤的恶性疾病。在专科中心进行临床管理和治疗对于实现高治愈率至关重要，临床指南建议在GTD中心登记作为最低护理标准。国家GTD登记处是流行病学数据的宝贵储存库，有助于临床审计、集中病理审查和人绒毛膜促性腺激素（hCG）监测。本研究征求了爱尔兰国家GTD登记处登记女性的意见，以为未来的服务发展提供信息，并为爱尔兰的葡萄胎妊娠建立知识库。
使用匿名问卷进行横断面调查，并通过邮寄方式分发给GTD登记处的所有女性。问卷由一个多学科团队设计，包括25个封闭式问题和2个开放式问题，以促进反馈。调查收集的数据包括患者登记体验、葡萄胎妊娠知识、当地医院诊断、hCG监测以及对服务的总体满意度等信息。
该调查的成功参与率为42.6%（215/504）。49%（n = 106）的受访者将快速获得hCG结果列为首要优先事项。40%（n = 84）的女性担心未来怀孕，但承认GTD专科护士在很大程度上解决了这些问题。四分之一的受访者报告说，她们在后续治疗中与之互动的其他医疗专业人员不了解她们的病情。许多女性提到，在处理流产的同时，在当地产科病房进行静脉采血时所承受的情绪压力。
本研究是对爱尔兰国家GTD登记处女性进行的首次调查，具有独特性。它突出了葡萄胎妊娠女性在心理支持、丧亲辅导和同伴支持小组方面的特殊需求。它揭示了医疗保健专业人员在葡萄胎妊娠方面的知识差距，在未来医学和护理课程规划中应予以考虑。
