Pediatric hematology providers’ contraceptive practices for female adolescents and young adults with sickle cell disease: A national survey

Abstract

Background: Adolescent and young adult (AYA) women with sickle cell disease (SCD) have increased pregnancy-related health risks and are prescribed potentially teratogenic medications, yet limited data are available regarding pediatric SCD provider contraceptive practices. We aimed to assess pediatric hematology providers' beliefs, practices, motivators, and barriers for providing contraceptive care to female AYAs with SCD.Methods: Guided by the Health Belief Model (HBM), we developed a 25-question, web-based survey to assess practices. Survey links were distributed nationwide to pediatric SCD and/or general hematology providers through their publicly available emails and by request to directors of U.S.-accredited Pediatric Hematology-Oncology fellowship programs for distribution to their SCD providers. Data analysis included descriptive statistics, chi-square analysis, and logistic regression.Results: Of 177 respondents, 160 surveys meeting inclusion criteria were analyzed.Most providers reported counseling (77.5%) and referring female AYA patients for contraception (90.8%), but fewer reported prescribing contraception (41.8%). Proportionally fewer trainees provided counseling compared with established providers (54% vs. 85%, p < .001), with a similar trend for prescribing (p = .05). Prescription practices did not differ significantly by provider beliefs regarding potential teratogenicity of hydroxyurea.

Assessment of menstrual health in adolescent and young adults with sickle cell disease

“…Individuals on hydroxyurea had comparable odds of utilizing a hormonal therapy compared to individuals not on hydroxyurea, yet the overall use of hormonal therapies in both groups was low at 20% or less. This finding does raise concerns given the possible teratogenicity of hydroxyurea, but is consistent with trends of contraceptive use among individuals with SCD on hydroxyurea reported by multiple pediatric hematology practices nationally 41–43 . The predominant motivator for initiation of hormonal therapy in adolescent and young adults with SCD regardless of hydroxyurea usage was disclosure of sexual activity 43 .…”

“…Depo medroxyprogesterone and progestin intrauterine device were the most common hormonal therapies used. The much lower rates of menstrual regulation therapies among adolescent patients reflect limited provider training on hormonal therapies, reduced provider experience and comfort with hormonal therapy management, few Women's Health clinicians for this age group, and limited published data on the safety and efficacy of hormonal therapies in adolescents with SCD 43,45,46 . Additionally, parents of minors may be hesitant for their children to use medications that are also considered contraceptives.…”

“…This finding does raise concerns given the possible teratogenicity of hydroxyurea, but is consistent with trends of contraceptive use among individuals with SCD on hydroxyurea reported by multiple pediatric hematology practices nationally. [41][42][43] The predominant motivator for initiation of hormonal therapy in adolescent and young adults with SCD regardless of hydroxyurea usage was disclosure of sexual activity. 43 Studies evaluating the trends of contraceptive use among adult women with SCD have also demonstrated low rates of contraceptive use compared to the general population (44%-49% among the population with SCD vs. 65% among the general population).…”

“…[41][42][43] The predominant motivator for initiation of hormonal therapy in adolescent and young adults with SCD regardless of hydroxyurea usage was disclosure of sexual activity. 43 Studies evaluating the trends of contraceptive use among adult women with SCD have also demonstrated low rates of contraceptive use compared to the general population (44%-49% among the population with SCD vs. 65% among the general population). 40,44 Depo medroxyprogesterone and progestin intrauterine device were the most common hormonal therapies used.…”

“…The much lower rates of menstrual regulation therapies among adolescent patients reflect limited provider training on hormonal therapies, reduced provider experience and comfort with hormonal therapy management, few Women's Health clinicians for this age group, and limited published data on the safety and efficacy of hormonal therapies in adolescents with SCD. 43,45,46 Additionally, parents of minors may be hesitant for their children to use medications that are also considered contraceptives. Lastly, concerns for the increased risk of VTE with estrogen-containing therapies in older adolescents and young women further complicates provider's comfort with prescribing hormonal therapies in SCD.…”