Giving a diagnosis of Premature Ovarian Insufficiency - The Importance of Good Communication: Insights from a Qualitative Study

OBJECTIVE: The objectives of this paper are to explore the communication of a diagnosis of Premature Ovarian Insufficiency (POI), and to examine how the way this diagnosis was communicated, and affects women with the condition. DESIGN: A qualitative study using semi-structured interviews and thematic analysis. SETTING: Participants were recruited from across the UK and interviewed remotely using Microsoft Teams. PARTICIPANTS: Sixteen women aged 18 and above with a diagnosis of POI. METHODS: Participants took part in in-depth interviews exploring their experiences of living with POI, including receiving a POI diagnosis. Interviews were recorded, transcribed, and analysed thematically. This paper reports on data concerning the experience of receiving a diagnosis specifically. RESULTS: Three key themes were identified: (1) Lack of information and support during the diagnosis communication (2) Emotional impact of diagnosis and (3) Framing POI as just a fertility issue. Participants reported considerable distress when diagnoses were delivered abruptly, digitally, or without appropriate support. Conversely, face-to-face, empathetic communication was described as validating and empowering. A consistent concern was the narrow clinical framing of POI as a fertility issue, with insufficient attention paid to long-term health risks, HRT, and emotional wellbeing. CONCLUSION: Communicating a diagnosis of POI requires a compassionate, holistic, and person-centred approach. There is an urgent need for healthcare professionals to embrace updated international guidelines, prioritise multidisciplinary care, and address existing disparities in access and support.