Primary Ovarian Insufficiency Investigating Women's Views and Lived Experiences

OBJECTIVE: To elicit concerns that women with primary ovarian insufficiency (POI) hold and their views regarding how care for women with POI could be improved. STUDY DESIGN: All women seen for POI care at a specialty clinic from May 2016 to December 2017 (n=55) were contacted by phone for consent. Women were asked about the impact of POI on their life and their satisfaction with care received. Impact of POI was described using the Likert scale, and narrative responses were collated to determine important themes. RESULTS: Of the 55 women contacted, 41 gave phone consent and 26 completed the questionnaire. The participants' mean age was 38.5 years, and they had received their diagnosis a mean of 6.5 years prior. Approximately 60% of women felt that POI negatively impacted their life, and 46% reported still harboring fears. Women felt that greater access to healthcare providers who are knowledgeable about POI could help improve care. CONCLUSION: Even years after diagnosis, women continue to be concerned about the impact of POI on their well-being. Because POI is a rare condition with limited availability of healthcare providers who have expertise, novel avenues of healthcare delivery, such as telemedicine, could potentially improve care for these women.