“What I Wish I Knew”: Clinically Relevant Concerns Women Express on Social Media About Oocyte Cryopreservation [ID 2683486

Abstract

INTRODUCTION: This is the first study to assess the clinically relevant understandings, beliefs, and concerns expressed about oocyte cryopreservation in spontaneous and unfiltered social media platforms as diverse as Reddit and TikTok. METHODS: We selected Reddit with its daily 56 million users to represent those aged 18–49 years and TikTok with its daily 1.6 billion users to represent those under 30 years. Search terms “Egg Freezing" and “Egg Freezing Support” as well as the subreddit thread “r/EggFreezing” were used on Reddit; search functions of “egg freezing” and “egg freezing journey” were used on TikTok. Exclusion criteria included having less than 10 relevant comments, non-U.S. account, embryo freezing, sponsored posts, and medical advice from non-patient medical professionals. Thematic saturation was achieved when 10 consecutive comments were reached with no new themes. Institutional review board approval was obtained, deemed as exempt. RESULTS: A total of 4,021 entries were evaluated, 355 were excluded, and 189 posts and 3,477 comments were included. Focusing on the 1,330 entries with clinically relevant themes, we found that the most common were “Recommended Age” (26%), “Out of Pocket Costs” (25%), “Side Effects” (18%), “What Can/Can’t I Do Before/During Egg Freezing” (18%), and “Number of Eggs Retrieved” (13%). Good examples addressing issues include “the hormonal roller coaster, the nightmare no one warns you about” and “I wish more doctors were more upfront about this.” CONCLUSION: Social media can be used to demonstrate educational gaps. In particular, physicians should be aware of unanswered questions women have about age and behaviors needed to maximize success in cryopreservation.