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Background
Sickle Cell Disease (SCD) is a group of inherited red blood cell disorders characterized by microvascular ischemic injury and vasoocclusive pain crises. SCD has a number of impacts on the adolescent period. Menstruation can trigger pain crises and those with SCD have heavier than average menstrual bleeding. Patients with SCD are also more likely to use teratogenic medications (especially hydroxyurea) and face poorer maternal health outcomes during pregnancy and delivery. All of this highlights the need to understand the rate at which adolescents with SCD are being screened for menstrual issues and sexual activity and whether they are being adequately counseled on menstrual suppression and/or contraception.
Methods
This is an IRB- approved retrospective chart review of patients with a diagnosis of SCD seen in the hematology department at Texas Childen's Hospital between September 1st, 2011 through September 30th, 2021. Descriptive statistics were used.
Results
A total of 611 charts met our inclusion criteria. Patients were excluded if they were younger than age nine at the time of their first hematology outpatient visit and if they had less than two visits total. Of all patients, 67% were asked about menstrual status. Two thirds were asked about sexual activity, 30% of whom reported sexual activity. Only 40% of those sexually active were counseled on pregnancy risk with SCD and offered contraceptive options. 71% of patients were started on hydroxyurea, but only 20% of those were counseled on its teratogenicity. 42% of patients were referred to gynecology however only 24% presented for a first visit. A total of 33% of patients were on contraception, with the top two indications being sexual activity and menstrual disorders. Of those on contraception, 50% took up the medroxyprogesterone acetate injection. Only 19% had a long-acting reversible contraceptive in place at some point during their care (levonorgestrel IUD or etonogestrel implant).
Conclusions
This research demonstrates that patients with SCD are not consistently screened for menstrual status or sexual activity, nor are they consistently counseled on adverse outcomes of pregnancy while on teratogenic medications, such as hydroxyurea, or as a result of SCD itself. However, for the minority of patients who are referred to gynecology, they do receive adequate counseling regarding options for menstrual suppression and pregnancy prevention. But even after counseling, patients with SCD take up long-acting reversible contraceptive options at lower rates than they do high failure methods, placing them at increased risk of unintended pregnancy.
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© 2023 Published by Elsevier Inc.
