Stroke Registries: Utilizing Comprehensive Data to Improve Outcomes

Editor’s note: This is the third in a three-part special series on the pivotal and evolving role of EMS in stroke care. In the September issue, the authors discussed decision-making criteria informing the ideal destination to transport patients with stroke symptoms (www.emsworld.com/article/218589) and profiled novel partnerships between EMS systems and stroke centers (www.emsworld.com/article/218588). Last month, the authors compared new stroke scales for EMS (www.emsworld.com/article/218774). 

Despite major advances in treatment and prevention, stroke remains a leading cause of death and disability in the U.S., impacting over 795,000 people annually.^1,2 Stroke disproportionately affects race-ethnic minorities, with disparities existing in morbidity, mortality, risk-factor prevalence, healthcare access and quality of care.³

Blacks and Hispanics experience disproportionate stroke risk-factor burden and prevalence, higher stroke incidence and higher stroke mortality at younger ages compared to whites.^4–11 Furthermore, race-ethnic disparities in acute stroke care are associated with increased mortality and rehospitalization rates.¹² Race-ethnic minorities are expected to account for 40% of the U.S. population by 2030, making disparities in stroke care a growing concern.³  

The causes of health disparities are complex and multifactorial. They include the interplay of socioeconomic, cultural and environmental components and contributors such as patients and healthcare systems. Age, race-ethnicity, sex and modifiable factors such as cultural and language barriers and low health literacy rates are known to contribute to inequalities in stroke care.^3,13 Decreased EMS activation and limited access to quality healthcare services, mainly stroke center-certified hospitals, are also barriers to achieving health equity and favorable stroke outcomes.^14–16 Addressing known disparities in stroke treatment and prevention may reduce the growing global burden of stroke.

Stroke registries provide critical insight into clinical practice and disparities in healthcare delivery and allow for the surveillance of trends in treatment and quality of care. They are also useful in evaluating clinical effectiveness and quality improvement (QI) as well as guideline implementation and adherence. Most national stroke registries were initiated in the mid-’00s and in the last decade have played important roles in accelerating stroke research that affects the advancement and delivery of effective, high-quality care.

In the U.S., two active national stroke registries exist, including the American Heart Association’s (AHA) performance improvement program Get With The Guidelines–Stroke (GWTG-S) and the Centers for Disease Control and Prevention-funded Paul Coverdell National Acute Stroke Registry. 

The GWTG-S program improves quality for in-hospital acute stroke care through the implementation of evidence-based guidelines. GWTG-S is the largest stroke registry and QI program for hospitalized stroke patients and since its inception in 2003, approximately 1,650 participating hospitals have entered millions of patient records. Data from this large QI registry have provided critical insight into race-ethnic and sex disparities in acute stroke care, showing lower quality of in-hospital care for blacks and women.^17,18  

Similarly the Coverdell program, established in 2001, was designed as a surveillance system to monitor, promote and improve the quality of stroke care in hospitals nationwide. Currently nine state health departments (California, Georgia, Massachusetts, Michigan, Minnesota, New York, Ohio, Washington and Wisconsin) are supported through the Coverdell program, partnering with hundreds of hospitals, EMS agencies and community service providers to develop high-quality stroke systems of care to improve care and reduce disparities in underserved populations. From 2005–2015, more than 620,000 patients benefited from hospital participation in this program. 

The FL-PR CReSD Study

Participation in stroke registries has been associated with increased adherence to stroke performance measures, leading to marked improvements in the delivery of care.^19,20 A few states have organized acute stroke registries focused on overall care monitoring and improvement, but no program has targeted race-ethnic disparities as a primary focus.

Awareness of disparities is a necessary first step toward changing behavior and creating interventions to effectively address them. While Florida is not currently a Coverdell-funded state, under the guidance of the University of Miami Miller School of Medicine, with the participation of the AHA, the University of Puerto Rico and Hospital HIMA (a Puerto Rican hospital consortium), the Florida-Puerto Rico Collaboration to Reduce Stroke Disparities (FL-PR CReSD) study was established in 2013 and funded by the National Institute of Neurological Disorders and Stroke. 

The FL-PR CReSD is a multicenter initiative designed to address disparities in stroke care through the creation of a voluntary stroke registry with data from participating GWTG-S hospitals throughout Florida and Puerto Rico. The Florida Puerto Rico Stroke Registry aims to evaluate race-ethnic, sex and geographic disparities in acute stroke care, investigate the frequency of disparities in short- and longer-term outcomes, and develop and disseminate culturally tailored QI programs to address identified disparities.

The FL-PR CReSD conceptual framework (Figure 1) graphically describes its cyclic impact on stroke care QI. Data integrated from prehospital (Florida’s EMSTARS database), in-hospital (GWTG-S) and post-hospital (CMS database) settings are analyzed to track quality of care and identify disparities. Culturally tailored QI interventions based on recognized disparities may effect changes within levels of the stroke-care continuum (individual, healthcare system, community, policy makers) that interact and form multilevel determinants of health. Resulting changes in stroke care and outcomes are reflected in the data provided to the registry, at which point the cycle begins again.

As of June 2017, the Florida Puerto Rico Stroke Registry consisted of 91 hospitals (76 in Florida, 15 in Puerto Rico) and over 150,000 stroke cases. Registry data has shown that stroke-care performance has improved over time for all race-ethnic groups with a similar trend also seen by sex.^21,22 In Florida, overall stroke care as measured by defect-free care (compliance with all eligible GWTG-S performance metrics) was comparable across race-ethnic groups and sex, though disparities in IV tPA administration were observed.

While the percentage of patients receiving IV tPA by 4.5 hours when arriving to the hospital by 3.5 hours rose over time regardless of race-ethnicity, African-Americans in Florida were less likely to receive tPA in this later time window regardless of arrival during “on” or “off” hours compared to whites (Figure 2). No differences were observed for Hispanics. Additionally, despite increases in the annual rate of thrombolysis with no significant differences between sexes, women were less likely to receive IV tPA overall. Although EMS use is independently associated with more rapid stroke evaluation and treatment, we found that fewer than half of all patients arrived by EMS regardless of race-ethnicity and sex. Future analyses will focus on regional and prehospital disparities in Florida. 

Addressing Disparities

To address identified disparities, the FL-PR CReSD has developed and disseminated various stakeholder interventions, including a stroke disparities training program, disparities dashboards and a door-to-needle (DTN) interactive module. The training program informs a broad spectrum of stakeholders in the strategies needed to decrease stroke disparities in underserved groups.

The hospital disparities dashboards allow sites to benchmark their adherence to stroke metrics by race-ethnicity and sex and compare their performance to other hospitals in the region and state. Furthermore, regional stroke care advocacy groups have expressed interest in the development of regional dashboards to share best practices, improve regional stroke-care delivery and strengthen partnerships within existing stroke systems. Finally, the DTN module, an interactive, web-based tool designed for EMS, stroke and ED teams, emphasizes evidence-based best practices to effectively shorten DTN times. 

The future of stroke registries includes efforts to improve patient transitions of care and data collection after acute stroke hospitalization, primarily targeting disparities in short- and long-term stroke outcomes (mortality, disability and readmission). In Florida, movement toward a statewide stroke registry standardizing data collection has also commenced.

Findings from the FL-PR CReSD and other described registries highlight the need for continued investments in state- and nationwide QI programs targeting areas where stroke performance is suboptimal and disparities exist.

Collaborative partnerships promoting the sharing of data and best practices will support and strengthen comprehensive stroke systems across the care continuum, translating into lives saved and a substantial impact made on the burden of stroke.  

References

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Maria A. Ciliberti-Vargas, MPH, is project manager of the FL-PR CReSD study and a first-year student in the primary care physician assistant program at the University of Southern California’s Keck School of Medicine. Reach her at Cilibert@usc.edu. 

Ralph L. Sacco, MD, MS, FAHA, FAAN, is principal investigator of the FL-PR CReSD study, a professor and chair of neurology and the Olemberg Family Chair of Neurological Disorders at the University of Miami’s Miller School of Medicine. He is current president of the American Academy of Neurology. Reach him at Rsacco@med.miami.edu.