Sickle Cell Disease in AYA Patients, Reproductive and Sexual Care
Dr. Seethal Jacob is a Hematologist and Director of the Comprehensive Pediatric Sickle Cell Program at Riley Hospital for Children at IU Health. Dr. Jacob is a featured expert in our health equity-focused Pro Hub that lists inclusive global healthcare professionals committed to advancing inclusive research and providing the highest quality care to all patients.
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As sickle cell disease care and life expectancy have increased over time, female adolescents and young adults (AYAs) now more frequently have concerns related to their fertility. Sexual and reproductive health (SRH) concerns can be top of mind for some female AYA patients with sickle cell disease. How important do providers think these discussions are, and how do they address these concerns with their patients? Here’s a look at the results of a recent sickle cell disease survey gathered from providers in the American Society of Pediatric Hematology/Oncology (ASPHO) SCD interest group.
In the survey compiled by pediatric sickle cell disease and adolescent medicine clinicians from Indiana University School of Medicine, Tufts University School of Medicine, and UPMC Children’s Hospital of Pittsburgh, the clinicians examined key sexual and reproductive health concerns. These concerns included contraception, sexual activity, menses, and pregnancy.
Reproductive and Sexual Concerns in AYA Sickle Cell Disease
Most of the sickle cell disease providers – 95 percent – agreed that sexual and reproductive health discussions are moderate or higher in terms of importance, and 89 percent of the providers thought that standardized guidelines for sexual and reproductive health should be created. Among the sexual and reproductive health concerns that pediatric sickle cell disease providers discussed with their patients, 90 percent of those surveyed discussed contraception, 78 percent discussed menses or menstruation cycles, and 61 percent discussed teratogenic medications. A majority (95%) rated SRH discussions as moderately important or higher, with 89 percent agreeing this care should be standardized.
As far as birth control recommendations, 83 percent of the surveyed providers referred their AYA patients to another care provider for management, 57 percent reported that use of combined hormonal contraceptives (estrogen and progesterone) was unacceptable, 40 percent recommended an injectable contraception, and 33 percent recommended levonorgestrelintrauterine devices (IUDs).
Sickle Cell Disease Advocacy for Improved Care
Sickle cell disease advocacy can help in continuing to move the needle forward for optimal care. Dr. Seethal Jacob, one of the clinicians for the survey, supports advocacy for SCD patients, “If there's no one around you that is excited or interested in sickle cell disease, find someone that is. Reach out to others who are sickle cell physicians or who are sickle cell advocates throughout the world, throughout the country. We're here for you, the way that we are for patients. We know how important it is to help this new generation be as excited and passionate about advocating for our patients as we are.”
Continued advocacy by patients, loved ones, and providers is vital to advancing and refining sickle cell disease treatments and care for all patients. Sexual and reproductive health of female sickle cell disease patients is an integral part of their care. With increased visibility on this SCD care concern, perhaps standardized guidelines and additional educational resources can emerge for improved patient care and health in the near future and beyond.
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Importantly, this information is not a substitute for, nor does it replace professional medical advice, diagnosis, or treatment. If you have any concerns or questions about your health, you should always consult with a healthcare professional.
Sources
Maayan Leroy-Melamed, Seethal A. Jacob, Marcia L. Shew, Traci M. Kazmerski. Provider Attitudes, Preferences, and Practices Regarding Sexual and Reproductive Health for Adolescents and Young Adults With Sickle Cell Disease. Journal of Adolescent Health website. Accessed January 14, 2022. https://www.sciencedirect.com/science/article/abs/pii/S1054139X21002901?dgcid=coauthor
