Holton S, Hammarberg K, Johnson L
Global and Women's Health, School of Public Health and Preventive Medicine, Monash University, 4/553 St Kilda Rd, Melbourne, Victoria, Australia.
Victorian Assisted Reproductive Treatment Authority, Level 30/570 Bourke Street Melbourne, Victoria, Australia.
Hum Reprod Open. 2018 Nov 8;2018(4):hoy019. doi: 10.1093/hropen/hoy019. eCollection 2018.
What are the fertility and childbearing concerns and related information needs and preferences of women with polycystic ovary syndrome (PCOS)?
Women with PCOS have concerns about fertility and childbearing mainly because they believe that it will be difficult for them to conceive, and identify a need for evidence-based information and preconception care so that they can make informed decisions about having children and achieve their reproductive goals.
Women with chronic conditions seek reproductive health information from a range of sources, including their healthcare provider, the internet, other women with the condition, patient associations and support groups, and scientific publications. Little is known about the fertility concerns and information needs of women with PCOS or their preferences for how and when to receive information about the effect of their condition and its treatment on fertility and childbearing.
A qualitative study of 13 women of reproductive age with self-reported PCOS living in Australia participated in an online discussion group conducted from May to June 2018. Women were recruited via targeted advertisements on social media.
PARTICIPANTS/MATERIALS SETTING METHODS: In a closed-group moderated discussion, participants responded to questions about fertility concerns and the related information needs and preferences of women with PCOS. Non-identifiable demographic information was sought via a separate online anonymous survey. The discussion transcript was analysed thematically.
Women identified a number of concerns about childbearing including whether they could become pregnant, how to prepare for pregnancy and what they should do before trying to conceive given their PCOS. Women reported seeking information about fertility and PCOS from a range of sources, and views about the most useful types and sources of fertility information for women with PCOS varied.
Due to the small sample size and recruitment of participants via advertisements on Facebook, women who participated in the study may not be representative of women with PCOS in the general population. Women currently contemplating childbearing or who have recently had children or fertility difficulties may also have been more likely to participate in the study. Women in this study self-reported PCOS, and this may not necessarily reflect a confirmed diagnosis of PCOS. No formal diagnostic criteria were used to confirm their PCOS status.
Women with PCOS would benefit from evidence-based information in a range of formats to help them make informed decisions about childbearing and achieving their reproductive goals. Preconception care, including counselling and information about appropriate interventions and self-management strategies to optimise health and improve chances of conception, may be of particular assistance to women with PCOS.
STUDY FUNDING/COMPETING INTERESTS: The Victorian Assisted Reproductive Treatment Authority (VARTA) commissioned researchers at Monash University to generate evidence to guide the development of resources to assist women with PCOS make informed fertility and childbearing decisions and achieve their reproductive goals. The authors have no conflict of interests to declare.
Not applicable.
多囊卵巢综合征（PCOS）女性在生育和育儿方面有哪些担忧，以及相关的信息需求和偏好是什么？
患有PCOS的女性对生育和育儿感到担忧，主要是因为她们认为自己难以受孕，并意识到需要基于证据的信息和孕前护理，以便能够就生育做出明智的决定并实现生殖目标。
患有慢性病的女性会从多种来源获取生殖健康信息，包括医疗保健提供者、互联网、其他患有该疾病的女性、患者协会和支持团体以及科学出版物。对于PCOS女性的生育担忧、信息需求，或者她们对于如何以及何时获取有关自身疾病及其治疗对生育和育儿影响的信息的偏好，我们了解得很少。
研究设计、规模、持续时间：一项定性研究，13名自我报告患有PCOS的澳大利亚育龄女性参加了2018年5月至6月进行的在线讨论组。通过社交媒体上的定向广告招募女性。
参与者/材料、环境、方法：在一个封闭小组的主持讨论中，参与者回答了有关生育担忧以及PCOS女性相关信息需求和偏好的问题。通过单独的在线匿名调查收集不可识别的人口统计学信息。对讨论记录进行了主题分析。
女性确定了一些关于生育的担忧，包括她们是否能够怀孕、如何为怀孕做准备以及鉴于自己患有PCOS在尝试受孕前应该做什么。女性报告从多种来源寻求有关生育和PCOS的信息，对于PCOS女性来说，关于生育信息的最有用类型和来源的观点各不相同。
局限性、谨慎原因：由于样本量小且通过脸书上的广告招募参与者，参与研究的女性可能不代表一般人群中的PCOS女性。目前正在考虑生育或最近生育过或有生育困难的女性也可能更有可能参与该研究。本研究中的女性自我报告患有PCOS，这不一定反映PCOS的确诊诊断。未使用正式诊断标准来确认她们的PCOS状态。
患有PCOS的女性将受益于多种形式的基于证据的信息，以帮助她们就生育做出明智的决定并实现生殖目标。孕前护理，包括咨询以及关于适当干预措施和自我管理策略以优化健康状况和提高受孕几率的信息，可能对患有PCOS的女性特别有帮助。
研究资金/利益冲突：维多利亚辅助生殖治疗管理局（VARTA）委托莫纳什大学的研究人员提供证据，以指导开发资源，帮助患有PCOS的女性就生育和育儿做出明智的决定并实现生殖目标。作者声明无利益冲突。
不适用。
