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.
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).
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.
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.
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Accepted: March 10, 2023
Received in revised form: February 28, 2023
Received: January 17, 2023
Publication stageIn Press Journal Pre-Proof
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