The #IVF journey: content analysis of IVF videos on TikTok.

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This cross-sectional analysis of 93 popular TikTok IVF videos found they disproportionately depict same-sex couples, gestational carriers, and live births compared to real-world data, while rarely focusing on health education or actionable information.

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This study analyzed the top 100 most-viewed TikTok videos using the #IVF hashtag to characterize patient portrayals and content quality. The analysis revealed that popular videos disproportionately featured live births, multiple pregnancies, same-sex couples, and gestational carriers compared to real-world clinical data, while scoring low on measures of health information quality and actionability. The authors note that these videos focus heavily on personal experiences rather than educational content, potentially creating unrealistic expectations for viewers seeking infertility treatment. Relevance to endometriosis: listed as one indication for IVF (a treatment often used for infertility caused by endometriosis), though the paper's main focus is social media representation of in vitro fertilization.

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Abstract

Research questionWhat patient populations and outcomes are depicted on IVF videos on the short-form video-sharing application 'TikTok'?DesignThis cross-sectional study investigated the 100 most-viewed videos utilizing the #IVF hashtag on TikTok. Only videos in English or Spanish were included in the analysis. An automated web-scraping platform was used to extract information from these videos. Standardized video coding was used to evaluate the featured subject(s), phase of care and IVF outcomes from the videos.ResultsVideos meeting the inclusion criteria (n=93) had 731 million views, 91 million likes and 893,000 shares. Patients' personal stories about IVF are over-represented relative to videos created by healthcare professionals. #IVF videos popular on TikTok disproportionately depict same-sex couples (38.1%), gestational carriers (14.0%), multiple gestations (60.0%) and live births (89.3%) relative to real-world data. Among the videos making scientific claims (n=16), nearly all were moderately to highly accurate (93.8%). Most videos had a positive (55.9%) or neutral (5.5%) tone towards IVF.ConclusionsPopular #IVF videos on TikTok contribute to public discourse about infertility, and highlight demographics that have traditionally been under-represented in health care. Videos rarely focused on health education or made informational claims, with low scores on measures of quality of information and actionability. This gap represents an opportunity for health providers and educators to create more engaging and educational content to reach patients considering IVF.
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Methods

We evaluated the top 100 most-viewed videos on TikTok utilizing the #IVF hashtag. This number of videos was chosen based on similar studies on TikTok in the medical literature and given the labor-intensive process of reviewing and characterizing videos ( Wu et al. 2022 ). Apify ( https://apify.com/ ), an automated web-scraping platform, was used to download, extract, and compile information from these videos on October 10, 2022. We excluded videos unrelated to IVF or in a language other than English or Spanish. Two independent reviewers (ITC, SL) performed standardized video coding, including the video’s featured subject(s), phase of care, and IVF outcomes. A third reviewer (BJP) arbitrated discrepancies. Two standardized scales were used: a modified 5-point DISCERN scale to assess the quality of health information contained within each video, and the Patient Education Materials Assessment Tool (PEMAT) to evaluate the understandability and actionability of each video. This study was determined exempt by the Duke University Institutional Review Board.

Results

Of the top 100 most-viewed videos, 6 videos were not in English or Spanish, and 1 video was a duplicate. The remaining 93 videos had approximately 731 million views, 91 million likes, and 893,000 shares. Ninety (96.8%) videos were in English and 3 (3.2%) were in Spanish ( Table 1 ). One fertility physician posted nine of the top 93 videos. Patients (N=65, 69.9%), embryologists (N=11, 11.8%), and doctors (N=10, 10.8%) were the most common content creators. Gestational carriers posted four videos (4.3%). Among videos depicting a couple, 25 (59.5%) were heterosexual, 11 (26.2%) were same sex female, and 5 (11.9%) were same sex male, while one (2.4%) video depicted a couple with a gender-queer individual. Videos often contained several themes, the most popular of which included: IVF journey (N=21, 22.6%), pregnancy (N=21, 22.6%), IVF injections (N=13, 14.0%), semen/sperm (N=10, 10.8%), miscarriages (N=9, 9.7%), births (N=9, 9.7%), embryo culture (N=8, 8.6%), gender reveals (N=5, 5.4%), and egg retrievals (N=3, 3.2%). Gestational carriers were depicted in 13 (14.0%) videos. One (1.1%) video depicted use of donor eggs. Most videos had a positive (N=52, 55.9%) or neutral (N=33, 35.5%) tone towards IVF. Duration of infertility was not discussed in most videos (N=84, 90.3%) and the cause of infertility was similarly infrequently discussed (N=86, 92.5%). Of outcomes depicted, the live birth rate (all births / [live births + failed cycles + miscarriages] depicted) was 89.3%. Videos discussing live births frequently depicted twins (N=8, 32.0%) and higher order multiples (N=7, 28.0%). Among the minority of videos making scientific claims nearly all were moderate-to-highly accurate (15/16, 93.8%). Videos focused more on personal experiences with IVF and infertility than presenting health education information, and scored low overall on DISCERN for quality of health information (mean 0.6 out of 5, SD 0.71). Understandability was substantially higher than actionability among videos on PEMAT (mean 83.1 [SD 11.9%] and 3.9% [SD 17.6%], respectively).

Discussion

Popular #IVF videos on TikTok feature compelling patient stories and disproportionately depict live birth, multiple pregnancy, same-sex couples, and gestational carriers. Of the top videos analyzed, the live birth rate was almost 90%, which is much higher than the overall live birth rate for autologous cycles reported by the Society for Assisted Reproductive Technology (34.2%) ( Society for Assisted Reproductive Technology 2023 ). While 16% of popular videos involved multiple order pregnancies, this was significantly higher than real-world data (6.0% twins, 0.2% triplets and higher order multiples) ( Society for Assisted Reproductive Technology 2023 ). About 40% of the videos depicted same-sex couples, of which over a quarter were same sex female, however only 3.1% of all IVF cycles in the United Kingdom were utilized by same-sex female couples in 2018 ( Human Fertilisation & Embryology Authority 2020 ). Furthermore, less than 1% of all IVF cycles in the US have historically used a gestational carrier, which is much lower than what is depicted among popular TikTok videos ( Perkins et al. 2016 ). This may be due to the popularity of this content to general audiences and provides important context for healthcare professionals about initial popular understanding of in-vitro fertilization. The over-representation of live birth (nearly 90%) emphasizes the importance of realistic expectation-setting between patient and provider prior to IVF. In contrast to other areas of reproductive health ( Wu et al. 2022 ), popular TikTok #IVF videos rarely focused on health education or made informational claims, producing low scores on normative measures of health quality of information and actionability. This gap represents an opportunity for health providers and educators to create more engaging and educational content to reach patients considering IVF. Similar to prior research about infertility on other social media platforms, #IVF videos on TikTok predominantly feature patient experiences, with lower representation from healthcare professionals ( Blakemore et al. 2020 ). Given the popularity of TikTok in the US, these videos contribute to the public discourse about infertility and highlight demographics that have been traditionally under-represented in the US healthcare system. The inclusion of diverse voices and experiences on this popular platform may contribute to de-stigmatization of infertility. We hope that this study on the representation of IVF on TikTok will help to inform future studies which, for example, could incorporate a larger sample of videos over multiple points in time. Given the dynamic nature of social media platforms, these strategies may facilitate more nuanced research questions and help to characterize trends on the representation of IVF.

Introduction

Social media has become a powerful platform for infertility awareness and information dissemination. Infertility can be a socially isolating experience, but social media offers the opportunity to for individuals struggling with infertility to connect and learn from each other’s experiences. TikTok is an increasingly popular short-form video-sharing application used by 117 million people in the United States (US) ( statistica 2023 ). However, little is known about infertility-related content on TikTok. We conducted a systematic content analysis of videos about in vitro fertilization (IVF) on TikTok to characterize differences in the portrayal of patients served by and outcomes from IVF.

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