EMD&T Training Can Address Areas of Health Disparities – the Case of Sickle Cell Disease
The community of clinicians and translational researchers must incorporate proven biological mechanisms and determine the real health benefit of formal CRF testing and exercise prescriptions. This has not been an easy task in the context of SCD. This is seen clearly when we compare CF and SCD. In U.S., there are approximately 30,000 people with CF and 100,000 with SCD. A PubMed search between 1966–2021 of "exercise and clinical trials" in children and adolescents revealed 121 publications about CF, but only 12 about SCD.
It is not that the safety and role of exercise and PA are seen as unimportant in either CF or SCD. The notion that heavy exercise could lead to vaso-occlusive crises in SCD or respiratory distress in CF may have inhibited earlier exercise clinical applications. In recent years, evidence is accumulating demonstrating the safety of laboratory exercise testing in SCD.
As part of the NIH/National Center for Advancing Translational Sciences (NCATS)–funded study project REACH (Revamping Exercise Assessment in Child Health), formal community engagement studios were conducted in collaboration with the NCATS Trial Innovation Network. Community consultants (children and adolescents with CF or SCD and their primary caregivers) repeatedly noted how important participation in PA was, but how little guidance there was for both SCD and CF for safe and beneficial participation. A major goal of the EMD&T-accredited training will be to ensure that the emerging specialists will accelerate the benefits of exercise as medicine across a diverse range of patients.
As noted by Cole et al. in a recent editorial in the British Journal of Sports Medicine, "Despite growing interest in structural factors affecting healthcare access, experiences and outcomes and the focus of professional competencies, regulatory body ethics and legislation, health justice research is at a nascent stage in sports and exercise medicine." The authors went on to suggest that exercise medicine practitioners "must also critically reflect on their position within societal structures, embrace individual and collective agency and develop engagement in activism."
Evidence is emerging of inequities of participation in exercise-based rehabilitation programs, for example, in older, female cancer survivors, and the efficacy of EMD&T in often-ignored people such as those with Down syndrome. The EMD&T working group sees this goal as one of critical importance in the proposed training.
The medical community is increasingly understanding that social determinants of health (SDOH) influence physical activity prescriptions and monitoring and normative laboratory values, essential in decision making of both diagnostics and therapeutics. Issues of health inequities and disparities can be exacerbated by physiological norms, such as pulmonary function testing, which had been previously thought to be unrelated to issues of environment, ethnicity, race, or culture.
Physical activity and exercise are human behaviors, and as such, are deeply influenced by a myriad of psychosocial as well as physiological factors. In our construct of the new EMD&T fellowship, we have built in an emphasis on the role of SDOH and health disparities in the clinical application of EMD&T. This includes the need to address how race and social determinants influence the accurate interpretation of so-called normative data in physiological function and laboratory values.