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
Authors' conclusion
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.
Study context
- Population
- Adolescents and adults with Turner syndrome (TS) in the UTHealth Houston/Turner Syndrome Society of the United States Research Registry; mean age 39.3 years (SD 16.9)
- Participants
- 169 survey respondents
- Outcome
- Estrogen use patterns
Methodological detailsregistry-based, REDCap survey, Survey distributed July–September 2024
- Registry-based
- REDCap survey
- Survey distributed July–September 2024
Main finding
As reported in the abstract
- Ever used estrogen
- 86%
- Still taking estrogen at time of survey
- 65%
- Discontinued estrogen and younger than 50 years
- One-third
- Interruption of estrogen use at least once over last 10 years
- 27%
Observational data: associations, not effects.
Further findings
Perceived need for estrogen therapy
- Did not believe they needed estrogen therapy
- More than one-third
- Of respondents younger than 50 years, did not believe they needed estrogen
- one in five
- Reason: perceived lack of health benefit
- 16%
- Reason: not sexually active
- 19%
- Reason: concerns about cancer risk
- 5%
- Reason: limited awareness of benefits of estrogen therapy
- 16%
Self-reported mental health diagnoses
- Any mental health diagnosis
- 47%
- Anxiety
- 80%
- Depression
- 69%
Safety
Side effects among current estrogen users
- Endorsed significant side effects (breakthrough bleeding, anxiety, depression, mood swings, brain fog, memory or learning difficulties)
- One in five
Original publication
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. Horm Res Paediatr. Published 10 September 2026. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →