National Survey of Pediatric Sickle Cell Providers on Their Contraceptive Practices for Female Patients

Introduction: Pregnancies of women with sickle cell disease (SCD) have increased risk of morbidity and mortality, with potential additional complications due to uncertain teratogenicity of hydroxyurea and the newer medications. Unintended pregnancy is common among adolescents and young adults (AYA). We aimed to assess the beliefs, practices and barriers of U.S. pediatric hematology providers related to contraception for female AYA with SCD, as little is known about this topic.

Methods: We developed a 25-question, web-based survey guided by the Health Belief Model to assess pediatric SCD providers' contraceptive perspectives and practices. Most questions were adapted from published surveys assessing provider views and practices on contraception for general AYA care or patients with other chronic health conditions. The survey was distributed from December 2020-April 2021 to licensed U.S. prescribers who provided care to female SCD AYAs ages 12-21 years within the prior two years. The anonymous survey was distributed by two methods: (1) a list of 526 pediatric SCD and/or general hematology providers from the HRSA SCD Treatment Demonstration Program Regional Collaborative, cross-referenced for reminder emails to 126 providers using a list from the HRSA Regional Genetics Collaborative (https://www.hrsa.gov); (2) directors from all 74 U.S. ACGME-accredited Pediatric Hematology-Oncology fellowship programs, asking then to forward the survey to their SCD providers. Surveys with >50% completion were analyzed using descriptive statistics and chi square analyses.

Results: Of 177 respondents, 160 surveys met inclusion criteria and were analyzed: 73 (45.6%) contacted by emails and 87 (54.4%) contacted via the fellowship directors (Table 1). Respondents recruited via fellowship program directors were more frequently NP/PAs (total of 30 (18.7%)), of younger age (total 103 (64.4%) and had fewer years in practice compared to those contacted directly. The majority of providers reported counseling (76.9%) and/or referring patients for contraception (90.9%), but not prescribing (41.8%). Practices regarding contraception differed by provider characteristics (Table 2). Trainees vs. established providers less frequently reported counseling about contraception (54.1% vs. 84.6%, p<0.001). Overall however, younger vs. older providers (<45 years), did not differ in contraceptive counseling (75.7% vs. 80.7%, p=0.7). Motivators for providing counseling differed by certain demographics (data not shown): female providers more frequently counseled about contraception when patients disclosed being sexually active (87.0% vs 66.7%, p=0.046); NPs/PAs more frequently counseled if standards for counseling were in place (45.5% vs 22.0%, p=0.03); and providers with more years in practice when they had concerns about SCD patients' increased pregnancy risks (43.1% vs 23.9%, p=0.03). Provider practices did not differ by region or size of SCD practice. Providers who believed that hydroxyurea causes increased risk of pregnancy complications more frequently reported prescribing contraception (48.8% vs. 31.7%, p=0.04), but did not differ by counseling or referral practices. Concerns about teratogenic risk of hydroxyurea was not significantly associated with provider practices. The most frequently reported barriers for counseling (>30% respondents) were insufficiencies in time, patient/parent willingness, formal training, knowledge/ability and/or professional guidelines. Concerns about side effects was a barrier to prescribing (34.2%), while lack of access to providers with contraceptive expertise was the most common barrier to patient referral (34.9%). Multivariate analyses are ongoing.

Conclusions: To our knowledge, this is the first national report of pediatric hematology providers' beliefs and practices regarding contraception for female AYA with SCD. While providers generally felt responsible for offering counseling and referral but not prescribing, practices varied based on certain provider characteristics, beliefs and perceived barriers. Clinical guidelines, improved provider education and training, and patient/parent decision

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