Results of Expert MeetingsAddressing disparities in sudden cardiac arrest care and the underutilization of effective therapies
Section snippets
Disparities in SCA
The reported annual incidence of SCD varies from 180,000 to >450,000 deaths across the general US population.15, 16, 17, 18, 19, 20 However, several studies have documented age, race, and gender differences in the risk of SCD.15, 21, 22, 23, 24 In addition, a recent cohort study of >10,000 patients with cardiac arrests due to ventricular fibrillation or pulseless ventricular tachycardia at 247 hospitals within the National Registry of Cardiopulmonary Resuscitation revealed that black patients
Disparities in SCA prevention
Treatment gaps and variation in care exist among numerous evidence-based therapies despite overwhelming clinical trial evidence, expert opinion, national guidelines, and a vast array of educational conferences.11, 12, 27, 28, 29 These gaps and disparities tend to be larger for newer therapies, particularly when they are more expensive and when a series of steps are required to determine eligibility. In addition, recommendations for medication and device therapies are continually and rapidly
Reasons for treatment gaps and variation in care
Sex- and race/ethnicity-based disparities exist in the delivery of evidence-based SCA care.30, 36 Analysis of the Acute Decompensated Heart Failure National Registry revealed significant variability among participating hospitals in terms of conformity to quality-of-care indicators and clinical outcomes with substantial gaps in overall performance.28 Other studies have also shown that nationally produced treatment guidelines are often adopted slowly and inconsistently in clinical practice.38, 39
Addressing disparities in SCA care
Although it is clear that disparities in SCA care exist in the United States, the driving forces underlying these disparities remain incompletely elucidated, but are likely due to a number of contributing factors at the patient, provider, public, and policy levels (Table I). In light of the large treatment gaps between the guidelines and clinical practice that exist for HF and other patients at risk for SCA as well as a large number of patients who are having hospitalizations and fatal events
Minimizing barriers to SCA care
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 (Table II). 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
Bridging the gap between knowledge and clinical practice
To improve the quality of SCA care and outcomes, tools and systems are needed to translate clinical trial evidence and national guidelines into routine clinical practice. Several methods to facilitate the implementation of guidelines were recommended in the 2005 ACC/AHA Guideline Update for the Diagnosis and Management of Chronic Heart Failure in the Adult.45 Academic detailing or educational outreach visits were Class I recommendations supported by level of evidence A (data derived from
Patient-level tools for education on SCA risk factors and prevention
To raise SCA awareness, educational tools and other avenues of information must be readily available to patients and the public. We inventoried existing educational tools about SCA risk factors and prevention from national organizations including the ACC, AHA, Heart Rhythm Society (HRS); from special interest groups including the American Black Cardiologists (ABC), National Alliance for Hispanic Health, Sudden Cardiac Arrest Association, and WomenHeart; and from ICD manufacturers including
Provider-level tools for identifying patients at risk for SCA
In addition to educational tools for patients and the public, clinical resources for health care providers are needed to improve their awareness of SCA; their ability to identify patients at risk for SCA in clinical practice; and their adherence to evidence-based, guidelines-driven practice patterns. Educational tools focused on health care professionals are listed in Table IV. Available tools include treatment algorithms based on published guidelines, tools for identifying key clinical
System-level tools and criteria for assessing acceptability of existing educational resources
Equally important to developing and disseminating patient- and provider-level educational tools about SCA is assessing the acceptability and quality of these tools at a system level. Educational tools should target 4 primary audiences: (1) patients, (2) providers, (3) the public, and (4) policy makers. As such, acceptability criteria should be tailored to the intended audience. One model for evidence-based decision-making highlights the importance of taking into account the clinical state and
Improving practice performance for SCA care
Practicing in the landscape of rapidly evolving recommendations for pharmacologic and device therapies, which have become increasingly nuanced, can be challenging; and coordination of care becomes more dependent on multidisciplinary collaboration among health care providers (primary care providers, cardiologists, HF specialists, electrophysiologists). As such, new approaches to improving the use of proven, guideline-recommended, life-prolonging therapies are needed.48 This complex intersection
Future research needs
In 2009, the top 4 priorities of the Institute of Medicine Comparative Effectiveness Research were (1) health care delivery systems, (2) racial and ethnic disparities, (3) functional limitations and disabilities, and (4) cardiovascular and peripheral vascular disease. Having identified the existence of disparities in SCA care, these mismatches should be addressed by focusing research and funding on evidence generation that will advance our knowledge and understanding of why these disparities
Next steps
To help inform and develop guidelines for addressing disparities in SCA care, we have synthesized the available tools for both patients and providers. Review of these tools during the SCA Thought Leadership Alliance proceedings revealed (1) the lack of standardized nomenclature across resources and (2) a wide variation in estimates of SCD incidence in the United States. Sudden cardiac death and sudden cardiac arrest are often used interchangeably, which is incorrect and likely represents a
Conclusions
Despite overwhelming clinical trial evidence, expert opinion, national guidelines, and a vast array of educational conferences, evidence-based, life-prolonging drug and device therapies continue to be underutilized, with significant disparities in SCA care and use of ICDs in vulnerable populations, including blacks, women, and the elderly. In light of the large treatment gaps between the guidelines and practice patterns for HF and other patients at risk for SCA, processes and tools are clearly
Disclosures
Sana M. Al-Khatib: receives research funding and speaking fees from Medtronic and Biotronik. She also receives research funding from the NHLBI and from the Agency of Healthcare Research and Quality.
Susan Campbell: none.
Mark Carlson: none.
Chris Chiames: none.
Nakela L. Cook: the views expressed in this paper do not necessarily reflect the views or official positions of the NHLBI, the National Institutes of Health (NIH), or the Department of Health and Human Services (DHHS).
Anne B. Curtis:
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