7. Fertility Attitudes and Turner Syndrome

Abstract

Background

Primary Ovarian Insufficiency is the main reproductive effect in individuals with Turner syndrome (TS). Guidelines recommend disclosure of reduced fertility in individuals with TS and counseling inclusive of options for fertility preservation and family planning. Although ovarian tissue cryopreservation (OTC) and oocyte cryopreservation (OC) are offered to individuals with TS, live births rates remain unknown. Also unknown are the attitudes of adolescents and young adults with TS (AYA-TS) and their parents regarding future fertility. The objective of this study was to compare differences in attitudes between AYA-TS and their parents regarding future fertility and fertility preservation.

Methods

After IRB approval, we conducted two studies in sequence of 12- to 25-year-olds with TS and their parents. First, to maximize acceptability/applicability of the Fertility ConcepTS questionnaire, a two-staged Delphi Procedure was implemented during 3 focus groups with AYA-TS and parents to develop/ refine survey questions. Second, a finalized cross-sectional survey was distributed via a social media platform of the Turner Syndrome Global Alliance and during a multidisciplinary TS clinic. Statistical analysis was performed using SPSS. Statistical significance was defined as P <.05.

Results

A total of 28 participants were included in the analysis. Sixteen (57%) were AYA-TS and 12 (43%) were parents (Table 1). The median age of AYA-TS was 17.5 (IQR 10.5) years and of parents was 48.0 (IQR 9.3) years. AYA-TS and parents did not differ in their interest in understanding the effects of TS on fertility and pregnancy, their interest building a family, their desire for awareness of the possibility of biological children, and their awareness that feelings about building a family might change (Table 2). AYA-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). While 6.3%, 18.8%, 37.5% and 31.3% of AYA-TS disagreed/strongly disagreed with adoption, donor egg, gestational carrier, and single parenthood, respectively, all parents agreed/strongly agreed. AYA-TS and their parents differed in their consideration for OC (p=.042), OTC (p=.021), and awareness of change in opportunity for OC/OTC (p=.002). Although all parents agreed/strongly agreed, 18.8%, 43.8%, and 18.5% of AYA-TS, respectively, disagreed/strongly disagreed with OC, OTC, and awareness of change in opportunity for OC/OTC.

Conclusions

AYA-TS and their parents have differing attitudes about fertility and fertility preservation. Counselling should include consideration of the needs of AYA-TS alongside parent priorities.