Defining the Impact of Social Drivers on Health Outcomes for People with Inherited Bleeding Disorders

Abstract

The ways in which the social drivers of health, also known as the social determinants of health (SDOH), affect health outcomes for people with inherited bleeding disorders (PwIBDs) is unclear. This systematic review of the published literature examines the impact of SDOH on health outcomes in PwIBDs. Articles that included the following parameters in PubMed informed this study: published in English between 2011–2021; available in free full text; study population diagnosed with an inherited bleeding disorder; and study measured at least one of the clinical/non-clinical outcome measures: bleeding frequency, chronic pain, mortality, quality of life (QOL), and/or cost. The main findings from the 13 included articles emphasized the unmet need for reducing the economic burden with sustainable population health strategies and treatment options for PwIBDs. Rural location was also a significant contributor to both delayed diagnosis and decreased access to care. Furthermore, the need for a multidisciplinary comprehensive care team to address physical, psychosocial, and emotional needs of PwIBDs was raised as a priority target in the desire for equitable and optimal health. This systematic literature review suggests that the SDOH are associated with inferior health outcomes and may influence the clinical progression of inherited bleeding disorders.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science

“…Research into SDoH and their impact on the health outcomes of PWIBD, currently poorly understood, is essential to mitigating inequities within the community and enabling all PWIBD to thrive [ 37 , 39 ]. This requires defining and collecting data that measure SDoH and meaningful markers of health equity from populations that represent the true diversity of the inherited BD community.…”

“…Most HTCs rely on revenue generated through the HRSA US 340B Drug Pricing Program to finance essential staff and services [ 20 , 38 ]. Sustainable funding of the HTC model in the changing treatment paradigm and financial barriers encountered by PWIBD related to high treatment costs, insurance coverage, copay assistance program issues, and out-of-pocket costs constitute important current and imminent challenges that could be better understood through HSR [ 19 , 20 , 34 , 39 ].…”

“…The root causes of social drivers that impact PWIBD’s health outcomes are not fully understood [ 37 ]; such research constitutes an important first step toward mitigating inequities within the community [ 39 ]. It is important to center discussions of data and health care on people and their experiences with health care and science, recognizing their societal context [ 61 ].…”

“…A recent systematic review of the impact of SDoH on inherited BD outcomes suggested an association with bleeding frequency, chronic pain, cost, and quality of life (QoL), and a possible influence on clinical progression [ 39 ]. This review underscores the need for multidisciplinary comprehensive care and reduction of economic burden with sustainable population health strategies and treatment options.…”