(on behalf of the International GDM Lived Experience Consortium Research Partners)
Background: How to screen for and diagnose gestational diabetes mellitus (GDM) has been a major point of discussion for many years. Limited international evidence examines perspectives of those with lived experience on detecting and diagnosing GDM. The Treatment of Booking GDM (TOBOGM) trial of early treatment included a parallel qualitative study of the perspectives of Australian and international women with lived experience to understand how to best implement findings and to address this research gap.
Aim: To examine women’s lived experience perspectives, of the preferred models for GDM diagnosis, criteria, screening, testing and communication/support.
Methods: Online and in person focus groups were conducted. Women with lived experience of GDM were invited to share their perceptions and experiences on what the criteria for GDM should be (based on existing medical evidence and their perceptions of practice, including preference for early/late diagnosis, one/two-step tests), who should deliver a GDM diagnosis, how it should be communicated and supports for women and their families. Discussions were transcribed thematically analysed, and then coded through Quirkos before collation into a framework combining themes and recommendations.
Results: Twenty-four participating women represented each major continent. Key themes included: preference for earlier diagnosis/single-step screening and increased promotion of early lifestyle interventions; enabling women to choose their preferences for testing/screening if not demonstrating risk factors; the need for agreed GDM criteria between primary and secondary care; preference for testing/screening to be from a health professionals they trust; early GDM education within primary care and pre-conception care, acknowledgement of the overwhelm of diagnosis and information overload, burden and stigma felt by the women; and recommendations for improved communication. A service framework called GDM CARE, with the acronym representing core themes (Communication/Collaboration, Acknowledgement/Accessibility/Autonomy, Relationships/Referrals and Earlier diagnosis) was developed.
Conclusions: Community agree on preventative measures (earlier treatment/diagnosis using a one-step approach) for the greatest benefit, especially in vulnerable groups, involving best practice communication and education, and support for women choosing their GDM testing based upon the highest level of evidence. How best to provide such measures needs further developed using the GDM CARE framework and tested within a randomised controlled trial.