Patterns, Perceptions, and Gaps in Estrogen Replacement Therapies Among Adolescents and Adults with Turner Syndrome: Insights from the UTHealth Houston/Turner Syndrome Society of the United States Research Registry.
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BACKGROUND: Most individuals with TS develop hypergonadotropic hypogonadism and need exogenous estrogen replacement for induction of puberty and continue to require estrogen replacement until approximately the age of natural menopause. Despite established guidelines, gaps remain in long-term adherence and patient understanding of estrogen therapy. This study explored estrogen use patterns, perceived benefits, and challenges among individuals with TS. METHODS: The study survey was implemented in Research Electronic Data Capture and distributed to UTHealth Houston/Turner Syndrome Society of the United States Research Registry participants between July and September 2024. RESULTS: A total of 169 individuals with TS responded to the survey. The mean age of study participants was 39.3 years (SD 16.9 years). Most (86%) had used estrogen at some point in their lives, and 65% were still taking estrogen at the time of the survey. One-third of participants who had discontinued estrogen were younger than 50 years old. Interruption of estrogen use occurred at least once in 27% of participants over the last 10 years. One in five participants currently taking estrogen endorsed significant side effects such as breakthrough bleeding, anxiety, depression, and mood swings, as well as brain fog and difficulties with memory or learning. More than one-third of participants did not believe they needed estrogen therapy, including one in five respondents younger than 50 years. Common reasons included perceived lack of health benefit (16%), not being sexually active (19%), concerns about cancer risk (5%), and limited awareness of the benefits of estrogen therapy (16%). Self-reported mental health diagnoses were common (47%), with anxiety (80%) and depression (69%) being the most frequently reported conditions. CONCLUSION: Estrogen replacement remains an essential component of long-term care for individuals with Turner syndrome. This survey identified important barriers to sustained estrogen use, including side effects, misconceptions regarding the need for therapy, and limited awareness of its health benefits. These findings highlight the importance of individualized counseling, patient education, and coordinated long-term follow-up to improve adherence and optimize long-term health outcomes.