Fertility concerns and related information needs and preferences of women with PCOS

STUDY QUESTION: What are the fertility and childbearing concerns and related information needs and preferences of women with polycystic ovary syndrome (PCOS)? SUMMARY ANSWER: 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. WHAT IS KNOWN ALREADY: 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. STUDY DESIGN, SIZE, DURATION: 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. MAIN RESULTS AND THE ROLE OF CHANCE: 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. LIMITATIONS, REASONS FOR CAUTION: 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. WIDER IMPLICATIONS OF THE FINDINGS: 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 INTEREST(S): 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. TRIAL REGISTRATION NUMBER: Not applicable.