Endocrine Abstracts (2019) 65 P372 | DOI: 10.1530/endoabs.65.P372

Turner syndrome and fertility discussion: food for thought from patients

Matilde Calanchini1, Rashi Joshi2, Antoinette Cameron-Pimblett3, Arlene Smyth4, Gerard S Conway3, Helena Gleeson2 & Helen E Turner1

1Oxford Centre for Diabetes, Endocrinology and Metabolism – Churchill Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford, UK; 2Department of Endocrinology – Queen Elizabeth Hospital, Birmingham, UK; 3Reproductive Medicine Unit – University College London Hospital, London, UK; 4Turner Syndrome Support Society, Glasgow, UK

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 16–25y, considered the optimal-age in 47%, 27% suggested 10–16y, 15% 25–35y. 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 (<6.0–10 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 women’s 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.

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