To better address barriers to SCA care, steps must be taken at the patient, physician, public, and policy levels as shown in the proposed framework (). At the patient level, culturally-relevant educational programs to increase patients’ knowledge of how to access care and participate in medical decision-making should be implemented. Navigator and support programs that assist patients in accessing care, understanding options, clarifying their health goals, obtaining financial resource information, and following through with treatment plans should be made readily available. The goal for patient-centric education and support is to increase decision-making satisfaction and increase “patient acceptance” of preventative therapies to yield optimal health outcomes from longevity to quality of life.44
Recommendations for addressing barriers to SCA care
Culturally relevant education and empowerment of patients is essential for eliminating disparities. An example of a patient-enabling tool is Celgene’s Patient Support Coordinator Program. This program serves as a dedicated, central point of contact staffed by trained professionals who provide personal assistance to patients concerning reimbursement, insurance claims and appeals, Medicare issues, co-pay assistance programs and services, information about pharmacies, prescriptions and Celgene’s patient assistance program. More research evaluating such programs and other interventions that improve patient and physician relationships is necessary to advance the field and provide evidenced-based tools that will decrease disparities.
One such study underway is the Educational Videos to Improve Patient Decision Making and Racial Disparities in Implantation of ICD therapy Via Innovative Designs (VIVID-01). To explore patient-level factors and decision-making, the VIVID investigators will examine whether an educational video increases patient knowledge about HF, the risk for SCA, and therapies to prevent SCA. This study will also evaluate patient satisfaction with this method of education and whether or not racial concordance between the patient and the health care provider further improves patient satisfaction with treatment decisions and disease knowledge (ClinicalTrials.gov identifier: NCT00918125). Additional analyses of IMPROVE-HF may help to determine if implementation of a cardiology practice-based performance improvement program for HF care helps to narrow or eliminate sex and race based disparities in the use of evidence-based HF treatments, which are effective for SCA prevention/treatment.
At the physician level, providing incentives to practices that reduce barriers, promote adherence to evidence-based guidelines, and demonstrate improvements in the delivery of care to vulnerable populations has a great potential to reduce disparities in SCA care. Additionally, the use of community health workers and the implementation of multidisciplinary treatment and preventative care teams will enable physicians to provide culturally and linguistically appropriate resources to communities.
At the public level, community programs targeting underserved populations should harness efforts to improve public awareness and education. Finally, at the policy level, a systematic approach to education, awareness, and prevention should be developed. Policymakers should advocate for quality/performance measures supporting the use of evidence-based guidelines as well as funding for future research and evidence generation focused on evaluating interventions that improve patient and physician communication. Disparities ultimately represent deficiencies in the quality of health care delivery and the existence of such disparities highlights the need for multidisciplinary disease-management systems that simultaneously address the barriers to equitable care. Reforms that address health care disparities should promote the consistency and equity of health care delivery by supporting the use of evidence-based guidelines and quality improvement initiatives. Additionally, quality improvement assessments must report performance measures by race/ethnicity, gender, age, and primary language. However, quality and performance improvement initiatives will help only if used consistently in all health care delivery venues.