Role of Menstrual Bleeding Assessments in Sickle Cell Clinics in Improving Quality of Care for Women- a Multicenter Approach

Introduction: Reproductive health education is lacking among individuals with sickle cell disease (SCD) despite many females reporting increased pain during menstruation. Research suggests that SCD-related pain associated with menstruation may be regulated with the use of hormonal therapy. Yet, education about safe and available contraceptive therapies is often lacking during routine sickle cell visits, leading to increased pain-related healthcare utilization and suboptimal management of menses and contraception. In this prospective cross-sectional study, we hypothesized that menstrual bleeding assessments, in the form of surveys conducted during sickle cell clinic visits would prompt timely identification and management of menstruation complications in females with SCD.

Methods: The study was primarily conducted by members of the Foundation for Women & Girls with Blood Disorders’ Women & Girls SCD Learning Action Network (WGSCD LAN) and Pacific Sickle Cell Regional Collaborative (PSCRC). The menstrual bleeding assessment consisted of 4 surveys; a patient survey and provider survey both created by the WGSCD LAN, a validated menstrual bleeding questionnaire (MBQ), and a validated measure of global health from the Patient Reported Outcomes Measurement Information System (PROMIS). The patient survey included questions about the patients’ experience with sickle cell pain in relation to menstruation, medications being used, their education, access to, and utilization of reproductive health services. The provider survey was completed after the provider reviewed the patient MBQ and surveys and included questions about the providers’ access to reproductive health services, the patients’ medical data, and the providers’ plans of care for that patient.

Sickle cell centers across the U.S. were recruited to participate through the WGSCD LAN and the PSCRC. Consented females who reached menarche for >12 months, had menses in the past 12 months, and were not pregnant or breastfeeding were requested to complete the patient, MBQ and PROMIS surveys by their sickle cell providers. For every patient survey filled, provider surveys were encouraged but not required.

Results: After IRB approval at 9 U.S. sickle cell centers, 6 institutions enrolled 56 females with SCD for the MBQs and patient surveys, with 45 (80%) provider surveys and 32 (57%) short PROMIS surveys completed. Most patients had hemoglobin SS disease (71%). Thirty-six (64%) females were ≥ 18 years old (range 18-48 years), and 20 (36%) were 13-17 years old. Mean MBQ score for adults with SCD was 17.3 (SD 9.6) (mean validated score 10.8,SD 8.8) and for adolescents with SCD was 16.1 (SD 7.5) (mean validated score 19.6, SD 7.6). Thirty-five (63%) females reported sickle cell pain with menstrual cycles. Despite this, only 7 females (12.5%) reported using one or more hormonal therapies in the 3 months prior, including oral contraceptives (n= 4), Depo injections (n =5), and/or an intrauterine device (IUD) (n =1). Only one female reported using condoms. Most sickle cell providers (38/45) were not prescribing hormonal therapies to their patients, however, all providers reported having access to reproductive health specialists in their institutions. Seven females reported not having heard of hormonal therapy, including 3 females >18 years of age. NSAID use of ≥5 days in a 2-week period was reported by 22% of females (12/54). In the PROMIS survey, only 28% females reported very good to excellent physical health and only 47% reported very good to excellent mental health. After review of MBQ, PROMIS and patient surveys, provider surveys (n = 32) noted intent to or provision of one or more of these services: verbal education about hormonal therapy by 25 (66%) providers, referral to a reproductive health specialist by 14 providers (37%), work-up for iron deficiency by 6 providers (22.2%), and work up for bleeding disorders by 4 providers (14.8%).

Conclusion: Patient reported sickle cell pain with menstruation is quite prevalent, but hormonal therapy use is minimal despite availability of reproductive health specialists in most U.S. sickle cell centers. Menstrual bleeding assessments in the sickle cell clinic can facilitate a dialogue and recognition of reproductive health concerns among females with SCD and enhance medical attention and care from hematologists and reproductive health specialists in collaborative models of care.