Translating Evidence Into Practice: A Decade of Efforts by the American Heart Association/American Stroke Association to Reduce Death and Disability Due to Stroke
2010; Lippincott Williams & Wilkins; Volume: 41; Issue: 5 Linguagem: Inglês
10.1161/str.0b013e3181d2da7d
ISSN1524-4628
AutoresLee H. Schwamm, Pierre Fayad, Joseph E. Acker, Pamela W. Duncan, Gregg C. Fonarow, Meighan Girgus, Larry B. Goldstein, Tammy Gregory, Margaret Kelly‐Hayes, Ralph L. Sacco, Jeffrey L. Saver, Wendy Segrest, Penelope Solis, Clyde W. Yancy,
Tópico(s)Cerebrovascular and Carotid Artery Diseases
ResumoHomeStrokeVol. 41, No. 5Translating Evidence Into Practice: A Decade of Efforts by the American Heart Association/American Stroke Association to Reduce Death and Disability Due to Stroke Free AccessReview ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessReview ArticlePDF/EPUBTranslating Evidence Into Practice: A Decade of Efforts by the American Heart Association/American Stroke Association to Reduce Death and Disability Due to StrokeA Presidential Advisory From the American Heart Association/American Stroke Association Lee Schwamm, MD, FAHA, Co-Chair, Pierre Fayad, MD, FAHA, Co-Chair, Joseph E. AckerIII, EMT-P, MPH, Pamela Duncan, PT, PhD, FAHA, Gregg C. Fonarow, MD, FAHA, Meighan Girgus, MBA, Larry B. Goldstein, MD, FAHA, Tammy Gregory, Margaret Kelly-Hayes, EdD, RN, Ralph L. Sacco, MD, FAHA, Jeffrey L. Saver, MD, FAHA, Wendy Segrest, MS, Penelope Solis, JD and Clyde W. Yancy, MD, FAHA Lee SchwammLee Schwamm , Pierre FayadPierre Fayad , Joseph E. AckerIIIJoseph E. AckerIII , Pamela DuncanPamela Duncan , Gregg C. FonarowGregg C. Fonarow , Meighan GirgusMeighan Girgus , Larry B. GoldsteinLarry B. Goldstein , Tammy GregoryTammy Gregory , Margaret Kelly-HayesMargaret Kelly-Hayes , Ralph L. SaccoRalph L. Sacco , Jeffrey L. SaverJeffrey L. Saver , Wendy SegrestWendy Segrest , Penelope SolisPenelope Solis and Clyde W. YancyClyde W. Yancy Originally published24 Feb 2010https://doi.org/10.1161/STR.0b013e3181d2da7dStroke. 2010;41:1051–1065Other version(s) of this articleYou are viewing the most recent version of this article. Previous versions: February 24, 2010: Previous Version 1 The American Heart Association's (AHA) stated mission is "to build healthier lives, free of cardiovascular diseases and stroke." Consistent with that mission, the AHA set a strategic direction in 1998 to provide information and offer solutions for the prevention and treatment of cardiovascular diseases and stroke in people of all ages, with special emphasis on those at high risk. The identified goal was to reduce coronary heart disease, stroke, and risk by 25% by 2010, as measured by 4 key indicators: A reduction by 25% in deaths due to coronary heart disease and stroke, prevalence of smoking, hypercholesterolemia, physical inactivity, and uncontrolled hypertension, along with a zero growth rate of overweight or diabetic individuals in the US population.To help achieve these goals as they related to stroke and to exemplify the organization's commitment to stroke, the AHA formed the American Stroke Association (ASA) in 1998. This article documents the milestones encountered in this decade-long journey from 1998 to the present and attempts to capture the critical success factors that enabled the ASA to play such a prominent leadership role in the fight against stroke. Although many other organizations were working alongside the ASA to accomplish these goals and made essential contributions in their own right, the purpose of the present report is to trace the path pursued by the ASA (or the AHA through its support of the ASA) and review in this context its central role as the lead organizer, the convener of experts, the cited source of stroke facts and statistics, and the organization that defined the common language for translating the available stroke evidence into real-world practice.The present report is organized according to 4 basic domains of translating evidence into practice: (1) generating basic science knowledge, (2) disseminating scientific findings, (3) convening experts for consensus, and (4) implementing guidelines into practice. It concludes with some of the strategic directions that the AHA or ASA (referred to in the remainder of this report as the ASA) will consider during the next decade to further reduce the burden of stroke, help ensure that stroke patients from all communities receive care of the highest quality, and lead to the best possible health outcomes for all patients. It is our hope that this may serve as an illustrative example or blueprint for other nonprofit, disease-focused advocacy organizations seeking to reshape the public health agenda to improve health outcomes.Background: Stroke in the Late 1990sDecades of scientific research in acute ischemic stroke therapy culminated in 1995 with the publication of the National Institute of Neurological Diseases and Stroke intravenous tissue plasminogen activator (tPA) study1 and approval of intravenous tPA for use in acute ischemic stroke in 1996 by the US Food and Drug Administration. However, by 1998, it had become clear that despite incorporating thrombolysis for acute ischemic stroke in guidelines and scientific statements by the AHA/ASA,2,3 the American Academy of Neurology (AAN),4 and the American College of Chest Physicians,5 rates of intravenous tPA use remained below 3%,6,7 and barriers to wider adoption were numerous.In addition to the gaps identified in primary prevention, stroke awareness, and acute stroke treatment and delivery, it became clear that many patients hospitalized with ischemic stroke and transient ischemic attack (TIA) were also not receiving additional evidence-based therapies to reduce poststroke complications or improve control of risk factors. In 1998, 1 American was having a stroke every 53 seconds and dying of stroke every 3.3 minutes (based on annual stroke deaths of 158 4488).The low rate of use of intravenous tPA and the high stroke mortality highlighted the fragmentation of service delivery that characterized acute stroke care in the 1990s. Public awareness of stroke signs and symptoms was inadequate, those at highest risk were often the least informed,9 emergency medical services (EMS) were ill-equipped to recognize or respond to acute stroke, and hospitals needed tools to help them develop and implement multidisciplinary acute stroke teams similar to those successfully deployed for acute myocardial infarction or trauma resuscitation.Translating Evidence Into PracticeFounding of the ASAAfter decades of supporting the scientific and educational efforts in stroke through the AHA Stroke Council, the International Stroke Conference, and the journal Stroke, the AHA founded the ASA in 1998 to function as the programmatic vehicle that would help drive the translation of advances in the science of stroke prevention, diagnosis, and treatment into policies, programs, and strategies that would facilitate their incorporation into clinical practices and behavior change. The ASA focused on reducing disability and death due to stroke through research, education, fund-raising, and advocacy.10 To accomplish the strategic impact goal of a 25% reduction in stroke mortality and risk, the ASA chose to focus on creating coordinated systems of care and influencing health policy to enact sweeping changes to stroke healthcare delivery. The ASA further supported education campaigns to help the public better understand stroke warning symptoms and approaches to prevent strokes, increased communication among healthcare professionals, and provided information to stroke survivors and their caregivers to enhance their recovery after stroke and improve their quality of life.Generating Basic Science KnowledgeAdvances in knowledge are essential to improvements in care. The ASA spends more money than any other organization except the federal government on stroke research and programs. Since 1949, the AHA/ASA has funded more than $3.1 billion of cardiovascular disease and stroke research. Furthermore, it has been a consistent and passionate advocate for federal funding of cardiovascular and stroke research, as well as programs at the National Institutes of Health and the Centers for Disease Control and Prevention (CDC).To further stroke research, the ASA funds basic clinical and population investigation in scientific areas related to stroke prevention, diagnosis, and other outcomes of treatment. These grants range from those provided to enhance the development of early career scientists via career development awards to those for senior investigators interested in outcomes research. Since 2001, more than 4400 stroke-related research grants have been funded (Figures 1A and 1B). During fiscal year 2005 to 2006 alone, the AHA/ASA spent almost $157 million on stroke-related research, programs, and activities. Overall, the AHA/ASA allocates an average of 50% of their research dollars for projects related to stroke and partners with other organizations to amplify this impact. To help young investigators, the Council on Clinical Cardiology and the Stroke Council have provided a limited number of seed grants for young investigators for meritorious research projects based on the data gathered from Get With The Guidelines (GWTG). The ASA also partners with private organizations to fund research. For example, in 2006, the Bugher Foundation joined with the ASA to provide 4 years of support for 3 Stroke Prevention Research Centers with the goal of developing an interactive network11 of institutions and scientists promoting collaborative, multidisciplinary research and training to improve the prevention of stroke. This network has come forth with and is now pursuing new collaborative goals in addition to the original research projects proposed. Download figureDownload PowerPointFigure 1. Temporal trends in stroke-related research projects, research funding, and International Stroke Conference (ISC) attendance.Dissemination of Scientific ResultsIn the field of cardiovascular disease and stroke, ASA journals are among those with the highest impact. In addition to publishing key research findings, they serve as important vehicles for the diffusion of ASA scientific statements and guidelines. The journal Stroke was the first dedicated stroke publication for scientists, researchers, and clinicians and is considered by most to be a premier journal in the field. The annual International Stroke Conference has grown consistently over the past decade to represent more than 3500 healthcare professionals gathered to share the latest emerging science in the prevention, diagnosis, and treatment of stroke (Figure 1C). In addition to the International Stroke Conference, the ASA also disseminates research using satellite broadcasts viewed live by 4000 to 8000 healthcare professionals at a time through satellite TV networks in hospitals across the United States and by thousands of additional healthcare professionals via CD-ROMs, videocassettes, or audiocassettes distributed after each broadcast. The ASA's World Wide Web site12 is one of the top-visited Web sites for the AHA, with more than 916 000 unique visitors, and contains a number of tools and resources targeted at multiple audiences, including healthcare professionals, stroke survivors, and family members.Convening Experts for Consensus-Based Guidelines and PoliciesThe ASA has a long tradition of convening organizations, individuals, and advocates to generate consensus opinions on scientific data, clinical recommendations, or policy positions. Strategic partnerships have been essential to the ASA's ability to create the models for stroke center design, align stroke performance measurement, and achieve national endorsement of stroke quality indicators, to name only a few. Some of these relationships are explored in more detail throughout this report.Clinical Guidelines and StatementsThrough its guideline writing committee structure under the auspices of the Stroke Council, the ASA has emerged as a leader in scientific guideline dissemination related to stroke. Using scientific research as the basis for its overall efforts, the ASA develops, maintains, and distributes comprehensive evidence-based practice recommendations to guide health professionals in stroke prevention and treatment and optimal poststroke recovery.13–18 In addition, it partners with organizations like the AAN,4 American College of Cardiology,19 Department of Veterans Affairs,20 and American College of Chest Physicians5 to align recommendations where overlaps exist.Performance MeasurementThere is increasing recognition of the power of performance measurement and financial or other incentives to improve care. The AHA/ASA worked to develop programs that recognize physicians who provide high-quality patient care through collaboration with the National Committee for Quality Assurance. This strategic collaboration led to the Heart and Stroke Recognition Program in 2003, with more than 2200 participating physicians.21 This voluntary program emphasizes the use of evidence-based vascular prevention measures and recognizes participating physicians who provide high-quality care for patients with cardiovascular disease and stroke.In November 2003, the ASA served as the scientific advisor to The Joint Commission (TJC) to develop a national disease-specific primary stroke center certification program based on the Brain Attack Coalition (BAC) recommendations.22 The primary stroke center certification program was the TJC's first advanced-level, disease-specific certification program aimed at identifying centers dedicated to achieving better outcomes for stroke care.23 This included monitoring of 4 required and 6 optional quality measures and was initiated in October 2004. A 12-month pilot study assessed the data reliability and collection burden, defined the measurement set and specifications, and identified potential measure modifications.At the time, many hospitals were participating in more than 1 stroke quality-improvement program, including the ASA's GWTG-Stroke, the CDC's Paul Coverdell National Acute Stroke Registry (PCNASR), and TJC's primary stroke center program. The 3 programs were collecting and reporting similar but nonidentical elements and measures, and there were substantive differences that greatly increased the burden of collection for hospitals. In May 2006, the ASA led a consensus effort with the CDC and TJC to align the set of data elements and measures.24 A harmonized set of 10 performance measures for stroke care was released effective January 1, 2008.In an effort to gain wider national adoption of these consensus measures, these measures were submitted in February 2008 to the National Quality Forum for endorsement.25 Eight of the 10 measures proposed were endorsed by the National Quality Forum and subsequently introduced into the TJC core measurement set for hospital accreditation. Owing in part to the ASA's efforts, the Centers for Medicare and Medicaid Services (CMS) recently published its intention to assess hospital participation in a systematic clinical database registry for stroke care effective for fiscal year 2010 and to include the 8 National Quality Forum–endorsed stroke measures for fiscal year 2012 payment under the "Reporting Hospital Quality Data for Annual Payment Update" for the inpatient prospective payment system. In addition, the ASA worked successfully with the CMS to replace the prior "Physician Quality Reporting Initiative" tPA measure with the new consensus-based tPA-administered measure effective in 2010.Collaborative Education CampaignsA lack of collaboration between emergency physicians and vascular neurologists was identified as a key barrier to implementation of acute stroke therapy. The Stroke Collaborative Campaign was developed with the AAN and the American College of Emergency Physicians to address this. The "Give Me 5 for Stroke" educational campaign included educational tools for patients and providers to improve stroke recognition, assessment, and diagnosis, as well as consumer outreach materials. Two patient-education documents bearing the logos of all 3 organizations address the risks and benefits of tPA, as well as what may occur in the emergency department, for patients who are diagnosed with a stroke or TIA. To date, more than 1.3 million support materials (eg, pins, posters, magnets, patient education materials, and physician resources) have been requested and/or distributed. A survey in November 2008 revealed that among responding emergency physicians and nurses, 87% intend to use the TIA document, 78% intend to use the tPA education sheet, and 84% believe that collaboration among the 3 organizations brings greater value to the campaign and education materials. The consumer outreach campaign on warning signs ("call 9-1-1" and "get to the ER fast") debuted in March 2008 and resulted in more than 200 million media impressions. The World Wide Web site (http://giveme5forstroke.org) displays the linkage of the 3 organizations; as of September 2008, the site has had more than 37 000 visits and 94 000 page views.Implementation of GuidelinesBy 1998, it had become evident that the mere publication of expert guidelines and practice recommendations was insufficient to change provider and patient behavior. A key part of the ASA strategy focused on identifying barriers to implementation of guidelines and fostering solutions.Understanding the Barriers of ImplementationFrom the start, the ASA embarked on a series of consumer surveys to assess public awareness of stroke prevention, symptoms, and treatment as a first step in gauging the magnitude of the problem and as a tool for measuring the success of its educational initiatives. These surveys formed the basis for the subsequent highly visible Ad Council campaign and demonstrated the impact of sustained national advertising campaigns on public awareness and behavior.Creating Infrastructure for Enhancing Care DeliveryThe ASA has always been an active participant in the BAC, an umbrella advocacy organization that consists of professional, voluntary, and governmental entities dedicated to reducing the occurrence, disabilities, and death associated with stroke.26 In 2000, the BAC published its Recommendations for Establishment of Primary Stroke Centers,22 which delineated a series of principles and guidelines for the structure and operation of primary stroke centers. This BAC consensus standard was critical to the evolution of public health policy that supported the formation of stroke centers and the preferential rerouting of patients to qualified centers. In 2005, the BAC published a second paper entitled Recommendations for Comprehensive Stroke Centers,27 which provided evidence- and consensus-based guidance to healthcare professionals, hospitals, and administrators for the development of comprehensive stroke centers.In response to the lack of local and regional stroke infrastructure to support thrombolysis and primary stroke center development, one of the first initiatives of the ASA was the Metro Stroke Task Force (MSTF) program. The MSTF gathered healthcare professionals, allied health providers, civic leaders, and representatives of community organizations in 5 selected cities and tasked them with the following goals: To increase knowledge and awareness of the signs and symptoms of stroke; to improve capacity and response of the healthcare system for stroke; to expand access to care for those at risk and those experiencing stroke; and to promote awareness of the need to adopt healthy lifestyles to prevent stroke. The first-year impact of the MSTF program was assessed through a comparison of citywide surveys performed at baseline and 1 year after MSTF implementation.28 All cities increased the implementation of hospital and prehospital stroke teams and protocols needed to assess and treat stroke patients. The MSTF program expanded to 15 additional cities, and the success and experience gained from MSTF was incorporated into the design of its successor, Operation Stroke, in 1999. Operation Stroke shifted the strategy away from individual silos of excellence and toward mobilization of the community for system change to improve the chain of stroke survival. The goal was to increase awareness of the chain's 4 links, (ie, rapid recognition and reaction to stroke warning signs; initiation of prehospital care; EMS system transport and hospital prenotification; and diagnosis and treatment at the hospital) and to strengthen the bonds between them.From 2000 to 2004, Operation Stroke was implemented in 109 metropolitan areas. It began with stroke screenings attended by more than 600 000 individuals, as well as sponsorship of more than 100 continuing medical education events for health professionals. With awareness on the rise, in 2004, Operation Stroke shifted its focus to building hospital infrastructure per BAC recommendations. Operation Stroke extended its reach to approximately 1500 hospitals (nearly one third of all acute care hospitals in the United States), and by the end of fiscal year 2004, 558 hospitals met all 12 BAC recommendations, up from just 219 hospitals earlier that year.Implementing Stroke Systems of CareWhile centers of excellence and pockets of innovation were developing under Operation Stroke, an integrated, comprehensive approach to stroke care was just emerging. In 2005, the ASA released Recommendations for the Establishment of Stroke Systems of Care,29 which described the fragmentation of stroke care and endorsed the shift to advocating for systems change and public policy adoption to create enduring systems of care that could address the entire continuum and the linkages between each domain from prevention through recovery. This coordinated stroke system-of-care model refined the prior chain-of-stroke-survival concept and expanded the scope to include 7 key components: Primary and primordial prevention; community education; notification and response of EMS; acute treatment for stroke; subacute stroke care and secondary prevention; rehabilitation and recovery; and continuous quality improvement of both the component domains and the whole stroke systems of care model itself. As is noted in "Programs and Processes: Illustrative Examples of Stroke System Development" below, GWTG-Stroke was one means used to further stroke systems of care by providing hospitals the tools needed to promote continuous quality improvement efforts.The critical addition of continuous quality improvement signified a change in the organizational approach within the ASA. This unifying document aligned the internal goals of the ASA with its state advocacy initiatives, to identify gaps in current healthcare delivery systems. Ultimately, this approach led to an internal reorganization within the AHA that reintegrated ASA back into the organization's core activities. Although there continue to be dedicated activities and staff unique to the ASA, access to the skills and resources of the entire AHA organization has allowed the ASA to extend its reach and increase its impact.AdvocacyFederal AdvocacyThe gaps in the organization of stroke care nationwide highlighted the need for action at the federal level to enact and fund efforts to facilitate access to quality stroke care. The ASA helped develop and pushed to enact the Stroke Treatment and Ongoing Prevention (STOP Stroke) Act, first introduced in 2003. The aims of this legislation were to (1) fund a national information campaign to educate the public about stroke, including prevention, recognition of warning signs, and response; (2) create a grant program to states to foster the development of coordinated, statewide stroke care systems; (3) create a clearinghouse to provide technical assistance to states and share best practices; and (4) support stroke-related training for healthcare providers. Unfortunately, despite strong bipartisan support, efforts to enact the STOP Stroke legislation were unsuccessful, and the bill is unlikely to be reconsidered in the near future. Given the lack of success with the STOP Stroke Act, the ASA shifted its focus to advocate for local and state efforts to implement the kinds of policy change envisioned within the STOP Stroke Act and outlined in the stroke systems of care model. In addition, the ASA continues to try to protect Medicare stroke patients from arbitrary limits on outpatient therapy services through its support of the Medicare Access to Rehabilitation Services Act of 2009 (Senate Bill 46/House Resolution 43),30 which would permanently repeal these financial caps.State AdvocacyThe ASA engaged in a number of activities aimed at fostering the development of stroke systems of care, including the creation of state stroke advisory taskforces and implementation of state-based stroke center certification programs, many of which included mandatory data reporting for compliance.31 Consistent with national goals, ASA regional staff played a central role in these efforts to promote stroke systems and improve quality of care locally and regionally. Many regions and states established stakeholder groups to review the elements of the stroke system of care in their communities and identify gaps. These committees included EMS providers, emergency physicians and emergency medicine nurses, stroke center leaders, rehabilitation specialists, patient educators, and Departments of Health staff. A summary of some representative state legislative and regulatory activities can be found in the Appendix.Grassroots Community OrganizationThe ASA also developed a national network in 2005 to organize grassroots advocacy for public policies at the local, state, and federal levels. Currently, through the "You're the Cure" network, 175 000 ASA volunteers advocate for vital funding for research and prevention, ways to prevent obesity (eg, improved quality of physical education and nutrition in schools), tobacco control (eg, smoke-free public areas), and greater access to stroke treatment and prevention.Measuring Progress and Setting GoalsThrough an integrated approach with state health departments and stakeholder organizations, the ASA promotes efforts to create coordinated statewide systems of care to improve the treatment of stroke patients in 5 key domains. These include the following: (1) working to ensure the recognition of primary stroke centers based on TJC certification or an equivalent process; (2) utilizing current ASA guidelines for stroke care to promote statewide standardization and implementation of the EMS system for stroke training, assessment, treatment, and transportation protocols; (3) supporting the utilization of telemedicine to extend stroke treatment expertise to underserved areas; (4) encouraging the removal of barriers for rehabilitation referral and treatment of stroke patients; and (5) increasing public recognition of stroke prevention and symptoms, as well as the need for early emergency intervention for acute stroke.To further these objectives, the ASA has established a formal committee of volunteers to develop metrics to evaluate progress in achieving these stroke systems milestones. Through the analysis of these progress measures, the ASA identifies gaps in care, increases attention to neurologically underserved areas, and creates messages to raise public awareness. Through the use of new tools such as geospatial information and geographic information system mapping, these progress marker efforts will enable a comprehensive assessment by 2010 of the stroke systems capacity in all 50 states. Markers include (1) the presence of coordinated triage systems between EMS and those hospitals with stroke treatment capabilities; (2) 100% population coverage with 9-1-1; (3) the percentage of EMS providers using a nationally recognized stroke assessment or scale; and (4) the percentage of hospitals participating in an acute-stroke quality-improvement registry or data-collection effort (Figure 2). Download figureDownload PowerPointFigure 2. Geospatial Information Systems (GIS) map displaying TJC primary stroke centers and state-certified or other stroke centers and the distance to the nearest TJC primary stroke center for the US population by county. Source: ESRI 2007. Joint Commission Primary Stroke Centers and State-Designated Stroke Centers as publicly reported on 1/1/09.As of January 2009, there were more than 541 TJC-certified primary stroke centers, 200 state-designated stroke centers, and 1330 GWTG-Stroke participating hospitals. Among these, 546 hospitals have received a GWTG performance achievement award for maintaining at least 85% compliance on each of the 7 GWTG-Stroke achievement measures (http://www.americanheart.org/presenter.jhtml?identifier=3022006) for a specified duration, with 156 bronze (90 consecutive days), 193 silver (12 consecutive months), and 197 gold (≥24 consecutive months) hospitals.32More than 80% of the US population (250 million residents) now lives within a 60-minute drive of a TJC-certified primary stroke center or state-designated stroke center, and 68.2% (211 million residents) lives within a 30-minute drive. Regionally, in 14 states, more than 90% of the population lives within a 60-minute drive of a TJC-certified primary stroke center or state-designated stroke center, and 86% lives within a 60-minute drive of a GWTG-Stroke award-winning hospital; in 8 states and Washington, DC, every resident lives within a 60-minute drive of a TJC-certified primary stroke center or GWTG-Stroke award-winning hospital. In 33 states and Washington, DC, 90% of the population has enhanced 9-1-1 coverage for landlines. All 50 states have a state hospital system map, state stroke stakeholder committee, and stroke awareness campaign and have included stroke on their state health policy agenda. This revolutionary transformation in the organization of acute stroke care delivery was accomplished in a relatively short period of time and lays the foundation for the additional components necessary to implement the architecture required to address the complete continuum of care.Programs and Processes: Illustrative Examples of Stroke System DevelopmentThe following section highlights efforts by the ASA aimed at developing or implementing programs wit
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