Fertility Counseling Lacking for Adolescents With Turner Syndrome

Reproductive health counseling is not routinely documented for young women with Turner syndrome.

For young women with Turner syndrome (TS), fertility and reproductive health counseling are not routinely documented, according to study results published in Fertility and Sterility.

The results also indicated that even among those with a limited window of potential fertility, patients were rarely referred to fertility preservation specialists.

The study included adolescents girls and young women with TS (mean age, 13.5±8.2 years) who received care in pediatric academic medical centers between March 2013 and March 2018 (n=469). The researchers used a standardized abstraction form to collect information from participants’ electronic medical records, including demographics; karyotype; menarchal status; developmental, neuropsychological, and psychological concerns; duration of care; receipt of multidisciplinary care; documentation of fertility/pregnancy counseling; and fertility preservation specialist referrals.

The researchers found that although 67% of families had documented fertility counseling, only 27% of charts documented counseling specifically with patients. Pregnancy risk counseling was documented in 38% of charts.

Of all participants, only 10% were referred to a fertility preservation specialist. Of patients with spontaneous menarche, 59% were not referred to a fertility preservation specialist.

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After performing multivariate analysis, the researchers found that families were more likely to receive counseling if the patient had multidisciplinary care (adjusted odds ratio [aOR], 2.82; P =.005).

Several variables were associated with an increased odds for referral to a fertility preservation specialist, including greater duration of care (aOR, 1.16; P =.006); mosaic (aOR, 47.94; P <.001), complex (aOR, 14.59; P =.005), or partial deletion karyotypes (aOR, 35.69; P =.001); spontaneous menarche (aOR, 4.65; P =.008); and receipt of multidisciplinary care (aOR, 4.02; P =.01). Developmental concerns and diagnoses, however, were associated with decreased likelihood of a referral (aOR, 0.08; P <.001).

“[I]nterventions are needed to ensure timely and routine fertility counseling and discussions of reproductive health risks for this population,” the researchers wrote.

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Morgan TL, Kapa HM, Crerand CE, et al. Fertility counseling and preservation discussions for females with Turner syndrome in pediatric centers: practice patterns and predictors [published online July 1, 2019]. Fertil Steril. doi:10.1016/j.fertnstert.2019.05.010