Fertility counseling and preservation practices in youth with lupus and vasculitis undergoing gonadotoxic therapy

This study shows that increasing awareness about infertility risk and fertility preservation is needed in pediatric rheumatology, and that guidelines are needed to improve fertility counseling practices in this population.

Volume 106, Issue 6, Pages 1470-1474


Leena Nahata, M.D., Vidya Sivaraman, M.D., Gwendolyn P. Quinn, Ph.D.



To assess fertility counseling and preservation practices among children, adolescents, and young adults with rheumatic diseases undergoing cyclophosphamide (CTX) treatment.


Retrospective chart review (2006–2016).


Academic pediatric center.


Male and female patients with systemic lupus erythematosus, Wegener's granulomatosis/granulomatosis with polyangiitis, or other vaculitides, receiving CTX treatment.



Main Outcome Measure(s)

Documentation of fertility counseling and fertility preservation.


A total of 58 subjects met the inclusion criteria; 5 were excluded due to incomplete records, thus N = 53. Of these 75% were female (N = 40). Median age was 14 years at diagnosis and 15 years at first CTX treatment. A total of 51% of subjects (69% of males and 45% of females) had no documentation about potential fertility loss before CTX treatment. Among females where fertility counseling was documented, the only fertility preservation option discussed was leuprolide acetate (LA), which was pursued in all of these cases. Of 13 males (77% postpubertal), 3 were offered sperm banking, of whom 2 declined and the other attempted after treatment began and was azoospermic. Of 53 patients, 1 was referred to a fertility specialist. Mean cumulative CTX dose was 9.2 g in males and 8 g in females.


Based on these findings, increasing awareness about infertility risk, fertility preservation options, and referral to fertility specialists is needed among pediatric rheumatologists. Prospective studies are needed to assess fertility outcomes in this patient population (including effectiveness of LA with regard to pregnancy rates [PRs]), as well as barriers/facilitators to fertility counseling and fertility preservation.

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