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

Abstract

Study objective: To 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 two-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.

Participants: Members of the Turner syndrome community.

Main outcome measures: Attitudes 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.

Results: 28 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).

Conclusions: In 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.