Women with sickle cell disease report low knowledge and use of long acting reversible contraception

Lydia H. Pecker, Sarah Hussain, Sophie Lanzkron, Xueting Tao, Katrina Thaler, Anne E. Burke, Natalie Whaley

Research output: Contribution to journalArticlepeer-review


Background: High rates of unplanned pregnancy and low rates of contraception use are reported among women with sickle cell disease (SCD). Pregnancy in women with SCD is high risk and unintended pregnancies limit opportunities to provide indicated preconception care and counseling. Contraceptive use in women with SCD is complicated by a lack of disease-specific data about treatment risks and benefits. The purpose of this study was to describe, for the first time in the U.S. context, contraceptive use, knowledge and preferences in adult cohort of women with SCD. Materials and Methods: A single-center survey study of women with SCD of reproductive age from our Center's adult and pediatric sickle cell centers. Results: Seventy-eight women ages 28-65 years (median 33.5 years, IQR 16) completed surveys. Seventy-three percent of respondents had an average of 2.5 pregnancies (S.D. 1.22) and of these, 58% reported being pregnant when they did not want to be pregnant at least once. The most common forms of contraception used were condoms (87%), birth control pills (46%), medroxyprogesterone (44%) and withdrawal (44%). Twenty-two percent of subjects reported using a long-acting reversible form of contraception and 21% reported a tubal ligation or partner vasectomy. Respondents demonstrated low knowledge of the efficacy of contraceptive options and over-estimated the risk of pregnancy with the IUD, implant. Contraceptive priorities included pregnancy prevention, decreasing HIV transmission and effects on SCD symptoms. Conclusions: Women with SCD have high rates of unintended pregnancy, low knowledge of contraceptive efficacy and low use of long-acting reversible contraception.

Original languageEnglish (US)
Pages (from-to)552-559
Number of pages8
JournalJournal of the National Medical Association
Issue number5
StatePublished - Oct 2021
Externally publishedYes


  • Contraception
  • Fertility
  • Pregnancy
  • Reproductive health
  • Sickle cell disease
  • Women

ASJC Scopus subject areas

  • Medicine(all)


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