Objectives: Despite recognized maternal and neonatal morbidity associated with unplanned pregnancy in women with sickle cell disease (SCD), unmet need for contraception in this population remains high. While low uptake of contraception in women with chronic disease is not unique to SCD, the impact of provider counseling and patient knowledge and attitudes on contraceptive use is unknown. Guidance on contraception for women with SCD is complicated by concerns about the safety of estrogen-containing methods due to increased risk of venous thromboembolism (VTE),[1-3] the potential non-contraceptive benefits of depot medroxyprogesterone acetate (DMPA) on pain[4-6] and the complex relationship between menses and sickle cell crises. The objective of this study was to evaluate contraceptive knowledge, attitudes, and experiences in a sample of women with SCD.
Study Design: A convenience sample of women from the adult and pediatric sickle cell clinics at an urban, academic institution in Baltimore completed a self-administered electronic survey. The survey instrument collected comprehensive medical and reproductive health history, explored participant experience with contraception and tested knowledge and attitudes about efficacy and safety of contraceptive methods.
Results: 54 women completed surveys. The median age of respondents was 35 years. Over 40% reported they were disabled or unemployed. Seventy percent of women reported a hospital admission for SCD in the past year and 74% reported at least monthly utilization of urgent services for pain crises. Fifty-five percent reported a history of unintended pregnancy, 77% had a history of at least one pregnancy and 74% reported a desire for no further pregnancies. One third of women at risk for pregnancy did not use a birth control method at last intercourse. The most common contraceptive methods were surgical sterilization (30%) and condoms (30%) followed by DMPA (9%). Women were more likely to use estrogen-containing methods (6%) than highly effective long-acting methods like intrauterine devices or contraceptive implants (3%). While the majority of women (83%) were told they had a high-risk pregnancy in the past and 50% were told by a physician they should not be pregnant for their own health in the future, only 23% reported knowledge of safety concerns with some contraceptive methods for women with SCD. Women primarily received contraceptive counseling from gynecologic providers and only 30% reported a provider other than a gynecologist had ever discussed birth control with them.
Conclusions: Women with SCD have unmet contraceptive needs. Women with SCD have some knowledge about their obstetric risks, and this knowledge appears to come from their lived experience and provider counseling. Women with SCD were less knowledgeable about the benefits and risks associated with contraceptive use.
Implications: Efforts to increase provision of contraception through coordination of care between hematologists, primary care and gynecologic providers has the potential to improve family planning services for women with SCD resulting in improvements in quality of life and a decrease in unintended pregnancy.
 Haddad L, Curtis K, Legardy-Williams J, Cwiak C, Jamieson D. Contraception for individuals with sickle cell disease: a systematic review of the literature. Contraception 2012;85:527-537.
 Manchikanti A, Grimes DA, Lopez LM, Schulz KF. Steroid hormones for contraception in women with sickle cell disease. Cochrane Database Systemic Review. 2007 Apr 18;(2):CD006261. Review.
 Naik R, Streiff M, Haywood C, Nelson J, Lanzkron S. Venous thromboembolism in adults with sickle cell disease: a serious and under-recognized complication. The American Journal of Medicine 2013;126:443-9.
 Abood M, de Castillo Z, Guerrero F, Espino M, Austin KL. Effect of Depo-Provera or Microgynon on the painful crises of sickle cell anemia patients. Contraception 1997;56:313-6.
 De Ceulaer K, Gruber C, Hayes R, Serjeant G. Medroxyprogesterone Acetate and homozygous sickle-cell disease. The Lancet 1982;2:229-31.
 ACOG practice bulletin No. 73: Use of hormonal contraception in women with coexisting medical conditions. Obstetrics and Gynecology 2006;107:1453-72.
 Yoong WC, Tuck M. Menstrual pattern in women with sickle cell anemia and its association with sickling crises. Journal of Obstetrics and Gynaecology 2002;22(4):399-401.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.