Evidence map›Paper›PMID 41043543›Full record

ArticleJournal of pediatric and adolescent gynecology2026

Fertility Attitudes of Adolescents and Young Adults With Turner Syndrome and Their Parents/Guardians: A Pilot Cross-Sectional Survey Study.

Tazim Dowlut-McElroy, Victoria O Hyunh, Lauren Roth, Madeline Ross, Anne-Marie Priebe, Jacqueline C Yano Maher, Veronica Gomez-Lobo

Abstract read
In one paragraph

Article in Journal of pediatric and adolescent gynecology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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4 · The record

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5 · Who and what money

Authors and funding

7 authors.

Tazim Dowlut-McElroyChildren's Mercy Hospital, Kansas City, Missouri; University of Missouri-Kansas City School of Medicine, Kansas City, Missouri. Electronic address: tdowlutmcelroy1@cmh.edu.
Victoria O HyunhEunice Kennedy Shriver National Institute of Child Health and Human Development/National Institutes of Health, Bethesda, Maryland.
Lauren RothChildren's Mercy Hospital, Kansas City, Missouri.
Madeline RossChildren's Mercy Hospital, Kansas City, Missouri.
Anne-Marie PriebeChildren's Mercy Hospital, Kansas City, Missouri; University of Missouri-Kansas City School of Medicine, Kansas City, Missouri.
Jacqueline C Yano MaherEunice Kennedy Shriver National Institute of Child Health and Human Development/National Institutes of Health, Bethesda, Maryland.
Veronica Gomez-LoboEunice Kennedy Shriver National Institute of Child Health and Human Development/National Institutes of Health, Bethesda, Maryland.

Funding

Pediatric and Adolescent Gynecology Training ProgramZIAHD008985 · NICHD · EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT · PI GOMEZ-LOBO, VERONICA · 2019 to 2021
$5.3M
Ovarian tissue for fertility preservation-which will involve 2 IRB approved protocols: 000106 and 000715ZIAHD009005 · NICHD · EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT · PI GOMEZ-LOBO, VERONICA · 2022 to 2025
$2.4M
Intramural NIH HHS ZIA HD008985Intramural NIH HHS ZIA HD009005
6 · The paper itself

Abstract

STUDY

objectiveTo compare differences in attitudes between adolescents and young adults with Turner syndrome (AYA with TS) and their parents regarding future fertility and fertility preservation.

design(1) FertilityConcepTS survey development with a 2-staged Delphi procedure. (2) Cross-sectional survey study.

setting(1) Web-based focus groups. (2) Survey dissemination during the multidisciplinary Turner syndrome clinic at a tertiary care children's hospital and via the social media platform of the Turner Syndrome Global Alliance.

participantsMembers of the Turner syndrome community.

main outcome measuresAttitudes about (1) Interest in understanding the effects of TS on fertility and pregnancy, (2) Opinions of having children that are genetically similar, (3) Alternative methods of building a family, and (4) Medical/surgical fertility preservation procedures with unknown outcomes.

resultsTwenty-eight participants were included in the analysis. The median age of AYA with TS was 17.5 (IQR: 10.5) years, and of parents was 48.0 (IQR: 9.3) years. AYA with TS and their parents differed in their consideration for adoption (p = .005), use of donor egg (p < .001), use of a gestational carrier (p < .001) and raising a child as a single parent (p = .002). Although all parents agreed/strongly agreed with oocyte cryopreservation (OC) and ovarian tissue cryopreservation (OTC), 18.8% and 43.8%, of AYA with TS, respectively, disagreed/strongly disagreed with OC (p = .042) and OTC (p = .021).

conclusionsIn this pilot study, AYA with TS and their parents have differing attitudes about fertility and fertility preservation. Counselling should include consideration of the needs of AYA with TS alongside parent priorities.

Indexed as

Attitude to HealthFertilityFertility PreservationHealth Knowledge, Attitudes, PracticeParentsTurner SyndromeAdolescentAdultCross-Sectional StudiesDelphi TechniqueFemaleFocus GroupsHumansMaleMiddle AgedPilot ProjectsAdolescents and Young adultsFertility preservationPrimary ovarian insufficiencyTurner Syndrome

Identifiers

PMID41043543
PMCPMC12687112

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.