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A new report sheds light on the gaps in knowledge and research surrounding the reproductive health of girls and women with sickle cell disease.
As women with sickle cell disease (SCD) are living long enough into their reproductive years, it becomes necessary to assess the gaps in knowledge when it comes to female reproductive health and providing optimal care.
An expert panel was convened by the US Centers for Disease Control and Prevention (CDC) to initiate conversation around these gaps in care, identify limitations, and propose research priorities to advance care for this population.
These findings were supported by the Foundation for Women and Girls with Blood Disorders (FWGBD); pediatric and adult hematologists, health policy analysts, epidemiologists, research biologists and policy directors; as well as the Sickle Cell Disease Foundation of California.
Their report was developed through working groups and public gatherings and, in addition to noting priorities for research, included key questions for all stakeholders to consider.
Although the 2014 National Heart, Lung, and Blood Institute (NHLBI) Sickle Cell Disease Guidelines suggest that all individuals with SCD should implement a reproductive life plan, no documents outlining transitions from pediatric to adult care acknowledge such a plan, nor do they standardize communication of reproductive health complications or concerns.
As such, the expert panel’s working group “takes a life span approach to considering reproductive healthcare concerns in girls and women with SCD and recognizes that the responsibility for this healthcare, although closely intertwined with SCD care, may not be perceived as the domain of paediatric or adult SCD specialists.”
The report also indicates that more research is needed to shed light on the biological mechanisms causing SCD-related pain during menstruation. As such, there lies a need to define evidence-based interventions so as to improve management and preventative practices for such a common complication.
The working group highlights the importance of fertility preservation, understanding the treatments that may interfere with or compromise one’s ability to conceive, exploring how fertility-preserving approaches can influence clinical care, and ensuring patients have access to such approaches.
They also brought focus to the optimization of preconception care—such as partner testing and genetic counseling, providing preconception end-organ assessments, and fertility preservation, to name a few.
More work needs to be done to develop evidence-based communication tools to aid in family planning and increase collaboration across subspecialties.
Other suggestions offered by the report include the need to optimize pregnancy outcomes so as to reduce associated maternal and infant morbidity and mortality, furthering an understanding into how women with SCD make reproductive decisions and experience parenthood, establishing preferences for breastfeeding, producing more studies on sex hormone use and their effects on patients, and establishing quality-of-care indicators for these patients.
Established priorities covered areas in growth and development, fertility and reproductive life planning, pregnancy and antepartum issues, and differences in sex across the lifespan.
Nevertheless, current limitations in reproductive healthcare for girls and women with SCD are tied to the reproductive healthcare disparities experienced by Black women.
“Inequitable distribution of healthcare resources, a paucity of SCD experts and limitations in insurance coverage contribute to severe limitations to SCD-related reproductive healthcare,” wrote the report authors.
“In the USA, adults with SCD lack specialists to provide care, unintended pregnancy is more common than in Europe, and access to comprehensive reproductive healthcare is limited by geography and health insurance status,” they continued.
As such, they stressed that global policies focused on building access to comprehensive reproductive healthcare can play a role in optimizing outcomes for these patients. Rigorous research can provide further evidence to inform care strategies and drive policy reform.
The review, “Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease,” was published online in British Journal of Haematology.