Women's experience of premature ovarian insufficiency (POI) diagnosis: update on actual practices and women's follow-up (EMPOIHER Study).

Abstract

Objective: Although premature ovarian insufficiency (POI) diagnosis can be devastating, few studies focused on women's experiences of the disclosure. The objective of EMPOIHER study was to evaluate women's satisfaction with POI disclosure and the association with subsequent adherence to the treatment plan and medical follow-up.

Methods: We studied a cohort of 101 women diagnosed with spontaneous POI who attended two French University Hospitals between 2017 and 2024. Standardized interviews collected gynaecologic history, experience of POI diagnosis, etiological and comorbidities assessment, POI follow-up and menopause hormone therapy (MHT) use. Women's satisfaction with POI disclosure was evaluated using a five-item scale assessing the health care provider's emotional responsiveness, clarity of communication, amount of information provided, opportunity for questions and relevance of discussed topics to the women's concerns.

Results: Sixty-four percent of participants declared they were globally satisfied or very satisfied with the way they were informed of their POI diagnosis. However, 70% sought more information using the internet or asked for the opinion of another practitioner. Surprisingly, psychological support was offered to only 19.8% of women. Solely 63.4% of participants benefited from MHT at inclusion. No association was found between women's satisfaction regarding POI disclosure and their adherence to follow-up and MHT.

Conclusions: While participants expressed general satisfaction with the communication of their POI diagnosis, there is room for improvement in clinicians' communication skills regarding providing information and empathy. Furthermore, women should be offered psychological support following POI diagnosis. Our findings emphasise the need for guidelines concerning the POI disclosure process. In this study, no association was found between women's satisfaction with POI announcement and their adherence to MHT and gynecologic follow-up.