Joint Sickle Cell-Gynecology Clinic Improves Access to Reproductive Health

INTRODUCTION An expanding population of adults with sickle cell disease (SCD) has necessitated comprehensive reproductive health care. Comprehensive gynecology care requires multi-disciplinary management of fertility, menstrual disorders, contraception care, and age-relevant screening. Moreover, chronic illness and limited resources together create significant challenges in accessing sub-specialty care. At the University of North Carolina (UNC), we have developed a monthly joint sickle cell-gynecology (SCD-GYN) clinic to provide convenient and co-localized care. OBJECTIVE This cross-sectional study reviewed our experience with a joint SCD-GYN clinic at UNC Comprehensive Sickle Cell Center. We sought to characterize the demographics and medical characteristics of patients who used this clinic. Then, we compared rates of access to gynecology care before and after implementation of the joint clinic. METHODS After getting IRB approval, we reviewed the records of patients with SCD who were cared for at the joint clinic from inception (June 2021) until December 2023. We collected data on demographics (age, gender, insurance coverage), clinical status (gravidity, parity, contraception use, sickle genotype and therapy) and visit characteristics (indication, frequency). We also collected utilization data (gynecology appointment rates) before and after inception of the clinic using a random sample of patients. RESULTS From June 2021 to December 2023, we cared for 54 unique participants, all of whom self-identified as female. The average age of the participants was 35y.o. (range 19-65y.o.). By their initial clinic visit, most participants (38/54, 70.4%) had been pregnant in the past, and 27/54 (50%) had never given birth. Most participants (33/54, 61.1%) had Medicare and/or Medicaid insurance. Forty-one (76%) of participants had HbSS or HbSß0 and most (37/54, 68.5%) were on some disease modifying therapy, most commonly hydroxyurea (25/54). Indications for the initial visit to the clinic included contraception counseling (17/54, 31.5%), routine health maintenance (16/54, 29.6%) and problem-focused (16/54, 29.6%). Since its inception, participants have had anywhere between 1-7 visits to this clinic. Forty-six (85%) participants were of reproductive age (18-45 y.o.); 14 of 21 women were newly started on contraception. 2 women switched contraceptive method. The newly prescribed contraception methods included 6 progesterone-only pills, 5 intra-uterine devices, 2 hormonal implants and 1 long-acting progesterone injection. Most (14/16) women received contraception method on the same day as the clinic encounter for counseling. Using a random sample of 30 female patients (average age 29 y.o.) seen before the SCD-GYN clinic, i.e. between 2016-2017, we found records of 10 completed gynecology appointments- 2 of which took place at UNC. In comparison with 30 female patients (average age 28 y.o.) seen between 2021-2023, where all 30 patients had at least 1 completed gynecology appointment, all of which were completed at UNC. CONCLUSIONS Our experience with a joint SCD-GYN clinic demonstrated improved access for our patients. Over a 2-year period, the clinic cared for patients with a wide age range and gynecological needs. Specifically, for those who required contraceptive care, the clinic offered education by providers with sickle cell and gynecology expertise. This resulted in prompt initiation of contraception on site in two-thirds (14/21) of reproductive-age women not previously on contraception. In addition, we demonstrated increased rates of appointment completion with gynecology. Finally, the nature of the clinic allowed for efficient multi-provider discussions regarding plans of care for our patients. This study was limited by its cross-sectional nature. To further improve patient-centered care, we are assessing patient-reported outcomes related to SCD and to reproductive health. This highlights the benefits of advocacy and support of comprehensive care for people living with SCD. Comprehensive SCD-integrated reproductive health may become more essential as gene therapy is widely adopted nation-wide.