Analysis of patient experiences with gestational trophoblastic neoplasia reported on Instagram social media

Objective: This study aimed to explore patient-reported content on Instagram social media posts focused on gestational trophoblastic neoplasia (GTN).

Study design: A cross-sectional search of public Instagram posts containing the term #gestationaltrophoblasticneoplasia from 1/1/2019-12/31/2019 was performed. This study included only patient-centered posts written in the English language posts. Investigators collected data for timing relative to diagnosis, subject matter, content, and tone. We utilized a staged approach to analyzing social media post content through familiarization, identifying the thematic framework, indexing, summarizing, and interpreting data. Descriptive statistical analysis was performed.

Results: In total, of 326 extracted posts from 1/1/2019-12/31/2019, 291 (89.3%) met the criteria for study inclusion. The majority of content was posted during chemotherapy (n = 142, 48.8%) or in the surveillance period (n = 121, 41.6%) after completion of treatment. Qualitative analysis identified ten major themes: cancer therapy and side effects (n = 142, 48.8%), pregnancy loss (n = 59, 20.3%), labs and imaging (n = 60, 20.6%), acknowledgement of a support person (n = 37, 12.7%), infertility (n = 32, 11.0%), hardships of parenting during cancer (n = 21, 7.2%), religion/spirituality (n = 18, 6.2%), diagnosis (n = 12, 4.1%) fear of recurrence (n = 10, 3.4%) and surgery (n = 7, 2.4%). Further, of the posts focused on chemotherapy side effects, approximately one-half (n = 38, 46.3%) discussed hair loss, and fatigue was reported in 25.6% (n = 21) of posts.

Conclusions: In this cross-sectional study of Instagram posts using the hashtag #gestationaltrophoblasticneoplasia, we identify that women with GTN use Instagram posts to share experiences unique to their cancer diagnosis, including chemotherapy side effects, including hair loss, infertility, labs and imaging, and the hardships of parenting during cancer. This analysis provides important information regarding patient values and experiences following a diagnosis of GTN.