Taylor L Morgan1, Hillary M Kapa2, Canice E Crerand3, Jessica Kremen4, Amy Tishelman4, Shanlee Davis5, Leena Nahata6. 1. Research Institute, Nationwide Children's Hospital, Columbus, Ohio. Electronic address: taylor.morgan@nationwidechildrens.org. 2. Research Institute, Nationwide Children's Hospital, Columbus, Ohio. 3. Research Institute, Nationwide Children's Hospital, Columbus, Ohio; Nationwide Children's Hospital, Columbus, Ohio; Department of Pediatrics, Ohio State University, Columbus, Ohio; Department of Plastic Surgery, Ohio State University, Columbus, Ohio. 4. Boston Children's Hospital, Boston, Massachusetts. 5. Division of Endocrinology, Department of Pediatrics, University of Colorado, Aurora, Colorado; eXtraOrdinary Kids Turner Syndrome Clinic, Children's Hospital Colorado, Aurora, Colorado. 6. Research Institute, Nationwide Children's Hospital, Columbus, Ohio; Nationwide Children's Hospital, Columbus, Ohio; Department of Pediatrics, Ohio State University, Columbus, Ohio.
Abstract
OBJECTIVE: To examine fertility counseling and fertility preservation (FP) referrals for young women with Turner syndrome (TS) at pediatric centers and identify possible associations with patient demographic and medical characteristics. DESIGN: Retrospective medical record review. SETTING: Pediatric academic medical centers. PATIENT(S): Four hundred and sixty-nine young women with TS (mean age = 14 years, standard deviation 8.5 years; 77% white) who received care between March 2013 and March 2018. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Standardized form to abstract demographics, medical (karyotype; menarchal status; developmental, neuropsychological, and psychological concerns), and treatment characteristics (duration of care, receipt of multidisciplinary care, documentation of fertility/pregnancy counseling, FP specialist referrals) from medical records. RESULT(S): We found that 67% of families had documented fertility counseling, although only 27% of charts documented counseling with patients specifically. Only 10% of patients were referred to a FP specialist; 59% of patients with spontaneous menarche had no referral. Pregnancy risk counseling was documented in 38% of charts. In multivariate analyses, families were more likely to receive counseling if the patients had multidisciplinary care (adjusted odds ratio [AOR] 2.82). Greater duration of care (AOR 1.16); mosaic (AOR 47.94), complex (AOR 14.59), or partial deletions karyotypes (AOR 35.69); spontaneous menarche (AOR 4.65); and multidisciplinary care (AOR 4.02) had increased odds of FP specialist referrals. Patients with developmental concerns (AOR 0.08) had decreased odds of referrals. CONCLUSION(S): Fertility and pregnancy counseling are not routinely documented among patients with TS, and even patients with a limited window of reproductive potential were infrequently referred to FP specialists. Patients seen in multidisciplinary clinics were more likely to receive recommended counseling.
OBJECTIVE: To examine fertility counseling and fertility preservation (FP) referrals for young women with Turner syndrome (TS) at pediatric centers and identify possible associations with patient demographic and medical characteristics. DESIGN: Retrospective medical record review. SETTING: Pediatric academic medical centers. PATIENT(S): Four hundred and sixty-nine young women with TS (mean age = 14 years, standard deviation 8.5 years; 77% white) who received care between March 2013 and March 2018. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Standardized form to abstract demographics, medical (karyotype; menarchal status; developmental, neuropsychological, and psychological concerns), and treatment characteristics (duration of care, receipt of multidisciplinary care, documentation of fertility/pregnancy counseling, FP specialist referrals) from medical records. RESULT(S): We found that 67% of families had documented fertility counseling, although only 27% of charts documented counseling with patients specifically. Only 10% of patients were referred to a FP specialist; 59% of patients with spontaneous menarche had no referral. Pregnancy risk counseling was documented in 38% of charts. In multivariate analyses, families were more likely to receive counseling if the patients had multidisciplinary care (adjusted odds ratio [AOR] 2.82). Greater duration of care (AOR 1.16); mosaic (AOR 47.94), complex (AOR 14.59), or partial deletions karyotypes (AOR 35.69); spontaneous menarche (AOR 4.65); and multidisciplinary care (AOR 4.02) had increased odds of FP specialist referrals. Patients with developmental concerns (AOR 0.08) had decreased odds of referrals. CONCLUSION(S): Fertility and pregnancy counseling are not routinely documented among patients with TS, and even patients with a limited window of reproductive potential were infrequently referred to FP specialists. Patients seen in multidisciplinary clinics were more likely to receive recommended counseling.
Authors: M J Schleedoorn; K Fleischer; Ddm Braat; Ajm Oerlemans; Aaem van der Velden; R Peek Journal: Reprod Biol Endocrinol Date: 2022-09-22 Impact factor: 4.982