Due to decreasing ovarian reserve from young age, counselling is vital as chances to conceive spontaneously decrease rapidly and early consideration of fertility options essential. Maternal/fetal-risks are high and patients/specialists face important considerations.
Aim: Service-evaluation of adequacy/appropriateness/sufficiency of information about fertility provided to TS patients.
Methods: TS women attending two TS-dedicated-centres participating in The-Reproductive-Life-Course-Project were invited to complete an anonymous fertility discussion questionnaire.
Results: 105 participants, 33 years, 8 spontaneous, 9 assisted-pregnancy, one adopted. 47/105 provided comments. Timing of fertility discussion was in 45% at 1625y, considered the optimal-age in 47%, 27% suggested 1016y, 15% 2535y. 24% would have preferred another time, 56% later. Importantly, 15/47 felt the discussion should occur earlier, although 4/47 suggested it should be patient originated. Fertility was discussed by one specialist/figure in 51%; mainly by Adult-Endocrinologist (43%). For 79% the suggested approach was by multiple specialists/figures, including mainly Adult-Endocrinologist (36%), along with parents/GP/Pediatric-Endocrinologist; 16% suggested another TSwoman. 2/47 commented discussion should be conducted by informed-specialists. Only 9% felt they received complete information. Oocyte-donation was discussed in 50%, cardiac-risks in 31%, adoption in 27%, fetal-risks in 15%. Insufficient (<6.010 scale) information was provided in 44%. 17% received written information/website details. 19/47 would have liked more information, 4 specifically about cost/funding of assisted-pregnancy, 4 about pregnancy-related risks. 41% used Turner-Syndrome-Support-Society website, 72% found sufficient (>6) information. 6/47 felt that ongoing/repeated discussion was important, 13% that discussion should be honest/open, 4% emphathic. Discussion should consider sexuality (2/47), psychological-impact of infertility (2/47), cultural-angle (1/47).
Conclusions: This is the first study assessing TS womens perspective, highlighting areas requiring improvement. Our data emphasize the importance of an individualised-approach in terms of timing, of early often-repeated discussions, conducted by TS-dedicated-specialists, involving parents/GP and TSSS for web-literature-information and experience/support from other TSwomen.