Abstract
Study Objective
Reproductive health counseling is important for youth with sickle cell disease (SCD)
given they experience potential infertility risks from SCD and its treatments and
high rates of unplanned pregnancies. Thus, the objective was to describe documented
occurrences of reproductive health counseling among youth with SCD and examine differences
in counseling by sociodemographic and treatment characteristics.
Methods
Data were abstracted from 167 electronic medical records (age=14-21, 54% female) with
SCD (1/01/2015-12/31/19) at two sites (Nationwide Children's Hospital [NCH] and Hassenfeld
Children's Hospital at NYU Langone [HCH]). Descriptive statistics, Point-biserial
correlations and Chi Square tests were used to examine sample characteristics and
relationships between sociodemographic factors, clinical characteristics, site, and
reproductive health counseling (fertility, contraception, and genetic counseling).
Results
Seven of 167 (4%) youth had documented discussions about potential impacts of SCD
on fertility. Fertility counseling was also low among those who received a bone marrow
transplant (BMT) or hydroxyurea (n=1/2; 50% and n=1/104; 1% respectively). Only 57%
of youth received contraception counseling and only 55% of sexually active youth used
birth control; birth control use was associated with older age (p=0.028), severe clinical disease (p=0.003), and documentation of contraception counseling (p=0.047). Most youth received genetic counseling (80%), though more genetic counseling
occurred at NCH (p<0.001). There was no association between gender and any type of counseling.
Conclusion
Findings suggest reproductive health counseling gaps in this population with important
implications for future infertility distress and unplanned pregnancies. Future research
should examine barriers to counseling, explore fertility impacts of SCD and treatments,
and inform evidence-based guidelines for reproductive health care in SCD.
Keywords
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Article info
Publication history
Accepted:
March 10,
2023
Received in revised form:
February 28,
2023
Received:
January 17,
2023
Publication stage
In Press Journal Pre-ProofIdentification
Copyright
© 2023 Published by Elsevier Inc. on behalf of North American Society for Pediatric and Adolescent Gynecology.
