Essential Features of a Surveillance System to Support the Prevention and Management of Heart Disease and Stroke
2006; Lippincott Williams & Wilkins; Volume: 115; Issue: 1 Linguagem: Inglês
10.1161/circulationaha.106.179904
ISSN1524-4539
AutoresDavid C. Goff, Lawrence Brass, Lynne T. Braun, Janet B. Croft, Judd D. Flesch, F.G.R. Fowkes, Yuling Hong, Virginia J. Howard, Sara Huston, Stephen F. Jencks, Russell V. Luepker, Teri A. Manolio, Christopher O’Donnell, Rose Marie Robertson, Wayne D. Rosamond, John Rumsfeld, Stephen Sidney, Zhi Zheng,
Tópico(s)Cardiac Health and Mental Health
ResumoHomeCirculationVol. 115, No. 1Essential Features of a Surveillance System to Support the Prevention and Management of Heart Disease and Stroke Free AccessReview ArticlePDF/EPUBAboutView PDFView EPUBSections ToolsAdd to favoritesDownload citationsTrack citationsPermissions ShareShare onFacebookTwitterLinked InMendeleyReddit Jump toFree AccessReview ArticlePDF/EPUBEssential Features of a Surveillance System to Support the Prevention and Management of Heart Disease and StrokeA Scientific Statement From the American Heart Association Councils on Epidemiology and Prevention, Stroke, and Cardiovascular Nursing and the Interdisciplinary Working Groups on Quality of Care and Outcomes Research and Atherosclerotic Peripheral Vascular Disease David C. GoffJr, MD, PhD, Lawrence Brass, MD, Lynne T. Braun, PhD, RN, CNP, Janet B. Croft, PhD, Judd D. Flesch, Francis G.R. Fowkes, MD, PhD, Yuling Hong, MD, PhD, Virginia Howard, MSPH, Sara Huston, PhD, Stephen F. Jencks, MD, MPH, Russell Luepker, MD, MS, Teri Manolio, MD, PhD, Christopher O'Donnell, MD, MPH, Rose Marie Robertson, MD, Wayne Rosamond, PhD, John Rumsfeld, MD, PhD, Stephen Sidney, MD, MPH and Zhi Jie Zheng, MD, PhD David C. GoffJrDavid C. GoffJr , Lawrence BrassLawrence Brass , Lynne T. BraunLynne T. Braun , Janet B. CroftJanet B. Croft , Judd D. FleschJudd D. Flesch , Francis G.R. FowkesFrancis G.R. Fowkes , Yuling HongYuling Hong , Virginia HowardVirginia Howard , Sara HustonSara Huston , Stephen F. JencksStephen F. Jencks , Russell LuepkerRussell Luepker , Teri ManolioTeri Manolio , Christopher O'DonnellChristopher O'Donnell , Rose Marie RobertsonRose Marie Robertson , Wayne RosamondWayne Rosamond , John RumsfeldJohn Rumsfeld , Stephen SidneyStephen Sidney and Zhi Jie ZhengZhi Jie Zheng Originally published18 Dec 2006https://doi.org/10.1161/CIRCULATIONAHA.106.179904Circulation. 2007;115:127–155Other version(s) of this articleYou are viewing the most recent version of this article. Previous versions: December 18, 2006: Previous Version 1 Executive SummaryA strategic goal of the American Heart Association (AHA) is to reduce heart disease, stroke, and risk for both by 25%,1 and Healthy People 2010 (HP2010) established 4 national goals for heart disease and stroke prevention and management.2 However, the current health tracking systems (surveillance) in the United States cannot track progress toward these goals in a comprehensive and systematic manner. This article provides a brief overview of these goals, prevention and management strategies, and the role of surveillance in monitoring the impact of prevention and treatment efforts. It also provides a review of the existing surveillance system for monitoring progress toward preventing heart disease and stroke in the United States and recommendations for filling important gaps in that system. This information will serve as an important basis for advocacy to guide the development of a comprehensive surveillance system to support the current HP2010 and AHA goals and the likely future goal of eliminating the epidemic burden of heart disease and stroke. Recommendations are categorized as overarching (fundamental recommendations that cut across goal areas) or as goal-specific. They are further classified according to priority (P) (I for high priority and II for intermediate priority. No low-priority recommendations were made), staging (S) (I for early staging [1–2 years], II for intermediate staging [2–4 years], and III for later staging), and cost (C) ($ for items estimated to cost less than $10 million per year, $$ for estimates of $10 to $100 million, and $$$ for estimates exceeding $100 million). In addition, potential barriers to action are addressed.Overarching RecommendationsA National Heart Disease and Stroke Surveillance unit should be established to produce annual reports on key indicators of progress in the prevention and management of heart disease and stroke. P I, S I, C $.Cardiovascular disease (CVD), including cardiac arrests, acute coronary syndromes (heart attack and unstable angina), stroke, chronic heart failure (CHF), and related interventional procedures, should be classified as reportable conditions. P I, S III (although developmental work should begin earlier), C $$$.Data collection about patients' encounters with the healthcare system should be revised to include collection of data on lipoprotein cholesterol concentrations, blood sugar, and glycohemoglobin values. P I, S I, C $.Data elements should be standardized across surveys, and unnecessary duplication in data sources should be avoided. P I, S I, C $ (potentially cost saving).The design and conduct of nationally representative surveillance programs should be revised to facilitate oversampling by states, territories, and tribal organizations and to provide meaningful estimates on ethnic subgroups in the populations. Sampling within states, territories, and tribal organizations should be designed to facilitate oversampling by counties. P I, S II, C $$ to $$$ (depending on extent of oversampling achieved).Mechanisms should be developed to enable linkage between healthcare data systems, including the national surveillance programs (eg, National Ambulatory Medical Care Survey [NAMCS], National Hospital Discharge Survey [NHDS], and National Death Index), and electronic health records. P I, S II, C $$$ (startup) and $$ (maintenance).Studies are needed to establish the validity of multiple measures collected by self-report and provider report in national databases. P II, S II, C $$.Recommendations for HP2010 Goals 1 (Risk Factor Prevention) and 2 (Risk Factor Detection, Treatment, and Control)Data collection in national surveys should be expanded to include important measures that are currently missing from the data collection process, such as information on awareness, detection, treatment, and control of physical inactivity, unhealthy diet, cigarette smoking, and obesity. P I, S I, C $.The states, territories, and tribal organizations should develop surveillance capacity to support program planning, implementation, and evaluation. Such capacity should include the ability to conduct standardized surveys that would include direct assessments of residents to enable collection of information about prevention, awareness, detection, treatment, and control of obesity, hypertension, dyslipidemia, and diabetes. P I, S I, C $$$.Indicators and systems for surveillance of policies and environmental conditions related to physical inactivity and unhealthy diet should be developed, tested, and implemented at the national, state, and local levels. P I, S II, C $.Recommendations for HP2010 Goals 3 (Early Identification and Treatment of Acute Events) and 4 (Prevention of Recurrent Events)Indicators and systems for surveillance of policies and environmental conditions (eg, proportion of the population covered by enhanced 9-1-1) related to symptom knowledge and recognition, acute healthcare-seeking behavior, availability of automated external defibrillators, and capabilities of the prehospital care system (including first responders and emergency medical services) should be developed, tested, and implemented at the national, state, and local levels. P I, S II, C $.Effective surveillance methods should be developed, tested, and implemented to support the collection of data on patients with newly diagnosed heart disease, stroke, CHF, and peripheral arterial disease (PAD) in the outpatient setting, including data on treatment and outcomes. P II, S III, C $$$.We have identified specific barriers to obtaining the new data elements that would be required to support the development of a comprehensive surveillance system. These include various methodological challenges, privacy concerns, and the costs associated with supporting new data systems and a comprehensive surveillance system.The success of efforts to prevent and manage heart disease and stroke is dependent on the availability of surveillance data at the national, state, and local levels to assist federal agencies, state and local health departments, and their partners in assessing prevention and treatment priorities and guiding program planning, implementation, and evaluation. This statement summarizes the information that is needed at the national, state, and local levels to address the HP2010 and AHA goals for 2010; furthermore, this document was designed with a longer-term perspective in mind. When possible, existing data collection efforts have been identified for the addition of new items. Significant gaps (eg, the complete lack of a data source for incidence and recurrence of heart attacks and strokes) and other deficiencies have been identified, and recommendations have been made for enhancement of the surveillance system in the United States. The most far-reaching recommendation may be the proposed designation of heart disease and stroke as reportable conditions across the continuum of care. This approach served to help focus attention on infectious diseases when infection control was the major public health imperative. A similar approach to heart disease and stroke is needed urgently. The other recommendations, although more narrowly focused in many instances, should result in the availability of better information for enhancing heart disease and stroke prevention and management programs. Implementation of all of the recommendations contained in this report would require commitment of substantial additional resources in addition to those already devoted to surveillance; however, some opportunities for greater efficiency were identified that could lead to cost savings, and a staged rollout of these recommendations could mitigate the financial impact. Finally, the return on investment could be substantial in terms of better population health and fewer acute episodes of heart disease and stroke, resulting in fewer inflation-adjusted healthcare dollars being devoted to acute care. Consequently, this statement should serve as a guide to policy makers as they work with public health agencies to develop and implement a surveillance system that can contribute importantly to efforts to prevent heart disease and stroke.IntroductionA strategic goal of the AHA is to reduce heart disease, stroke, and risk for both by 25%,1 and HP2010 established 4 national goals for heart disease and stroke prevention and management.2 However, the current health tracking systems (surveillance) in the United States cannot track progress toward these goals in a systematic manner. This report provides a brief overview of these goals, prevention and management strategies, and the role of surveillance in monitoring the impact of prevention and treatment efforts. It also provides a review of the existing surveillance system for monitoring progress toward preventing heart disease and stroke in the United States and recommendations for filling important gaps in that system. This information will serve as an important basis for advocacy to guide the development of a comprehensive surveillance system to support the current HP2010 and AHA goals and the likely future goal of eliminating the epidemic burden of heart disease and stroke.The primary objectives of this report are to (1) define the key data needed to track progress toward the prevention and optimal management of heart disease and stroke; (2) identify existing data sources and gaps relevant to these data needs; and (3) recommend and prioritize data needs. This effort was motivated by the belief that improvements in knowledge can lead to more effective action. Hence, the goal is to document the potential benefits of having more timely access to important data about heart disease and stroke in the United States by addressing 2 questions: What data are available? What additional data do we need to make better policy and programmatic decisions?Public Health Burden of Heart Disease and StrokeThe major sources of readily available published statistics on heart disease and stroke in the United States include the annual report from the AHA, Heart Disease and Stroke Statistics,3 and the biennial report from the National Heart, Lung, and Blood Institute, Chart Book on Cardiovascular, Lung, and Blood Diseases.4 It is estimated that 71 300 000 Americans have CVD, although many have high blood pressure as their only manifestation of CVD.3 Heart disease and stroke are the most common of the major forms of CVD, affecting women and men of all racial/ethnic groups and ages. In 2003, 13.2 million Americans had prevalent coronary heart disease, 5.5 million had prevalent stroke, and 5 million had heart failure.3 With the aging population, the prevalence of heart failure is expected to reach 10 million cases by 2007.5 More than 8 million adults in the United States are affected by PAD, a condition that increases in prevalence with age and is more prevalent in blacks.3,6,7 Although no surveillance system exists to monitor incidence of heart disease and stroke, estimates have been computed and published by the AHA and the National Heart, Lung, and Blood Institute.3,4 The estimated annual incidence of acute myocardial infarction is 565 000, and another 300 000 recurrent attacks occur annually. The estimated incidence of stroke is 500 000 per year, and another 200 000 recurrent strokes occur annually.3 Among stroke survivors, 15% to 30% are permanently disabled.3Heart disease and stroke have been first and third, respectively, among the causes of death in the United States for several decades. In 2002, CVD accounted for ≈37% of all deaths among US residents and was listed as a primary or contributing cause of death on approximately 1 400 000 death certificates.3 Although age-adjusted CVD death rates declined considerably from 1979 to 2002, there was only a slight decline in the absolute number of CVD deaths.4 Additionally, the decline in mortality from heart disease and stroke has not been equal across all racial/ethnic groups; non-Hispanic whites have experienced the greatest declines.8,9Heart disease and stroke share many of the same modifiable risk factors, such as hypertension, cigarette smoking, diabetes mellitus, obesity, physical inactivity, and, at least for ischemic stroke, dyslipidemia. The percentage of US adults free of these major risk factors decreased from 42% in 1991 to 36% in 2001 based on self-reported data from the Behavioral Risk Factor Surveillance System (BRFSS).10 It is likely that these data overestimate the proportion of the population free of these major risk factors for CVD, because these data are based on self-report and, in some instances, on access to health care for diagnosis. This trend is yet another indication of the substantial public health burden of heart disease and stroke and the need to implement a coordinated and comprehensive national effort to prevent heart disease and stroke.Efforts to reduce the burden of heart disease and stroke have been hampered by a lack of knowledge in key areas. Although the emerging obesity epidemic has been developing for several decades, widely spaced episodic surveillance programs contributed to the delay in identification and response.11 Similar challenges contributed to a delay in recognizing a reversal in the downward trend in prevalence of high blood pressure and an inability to monitor hypertension control.12 The lack of data on prehospital delay times in patients with symptoms of acute coronary syndromes has hindered evaluation of progress toward the "60 minutes to treatment" goal of the National Heart Attack Alert Program.13,14 Current efforts to redesign systems of care for patients with ST-segment elevation myocardial infarction are constrained by a lack of knowledge of the processes of care delivery in various systems.15 The lack of data has hindered efforts to increase the use of evidence-based therapies (eg, aspirin, β-blockers, and thrombolysis) for patients with myocardial infarction16 and stroke17 despite major efforts to disseminate knowledge of the effectiveness of these therapies.18,19The annual cost associated with CVD in the United States was estimated to be $403.1 billion for 2006.3 This figure includes health expenditures such as costs of physician, hospital, and nursing home services, as well as lost productivity, but it is likely to be an underestimate because, especially for stroke, the informal care costs and costs of comorbidities may not be included.20 The cost of CVD is likely to increase dramatically over the next several decades as the "baby boom" population enters the peak heart disease years, putting additional strain on the public health and healthcare delivery systems.21 It will be increasingly important to conduct surveillance of healthcare costs in addition to outcomes to inform policy makers about the most rapid increases in expenditure lines, whether the return on investment is justifiable, and whether current or new policies are likely to bankrupt the system while trying to help people live longer, healthier lives. Download figureDownload PowerPointFigure. Action framework for a comprehensive public health strategy to prevent heart disease and stroke. HTC indicates high total cholesterol; HBP, high blood pressure; DM, diabetes mellitus; SCA, sudden cardiac arrest; and MI, myocardial infarction.HP2010 and AHA Goals for Prevention and Management of Heart Disease and StrokeHP2010 is a comprehensive set of disease prevention and health promotion objectives for the United States to achieve during the first decade of the 21st century.2 The overall goals of HP2010 are to increase the quality and years of a healthy life and to eliminate health disparities. The leading health indicators identified in HP2010 include physical activity, overweight and obesity, and tobacco use. The relevant national health objectives are to increase physical activity, reduce overweight and obesity, and decrease cigarette smoking among adolescents and adults. The 4 goals of HP2010 specific to CVD are shown in Table 1. The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health have been charged with leadership responsibility for achieving these goals. The HP2010 Partnership, in which the AHA is a partner, has been established to stimulate progress toward achieving these and other HP2010 goals. The 10-year impact goal of the AHA, to reduce coronary heart disease, stroke, and risk for both by 25% by the year 2010, is aligned with these national health objectives.1 Specific indicators established by the AHA are shown in Table 2. Efforts are ongoing to develop goals for 2020 and beyond; hence, the recommendations provided in this document are intended to be flexible. TABLE 1. HP2010 Goals Specific to Heart Disease and StrokePrevention of cardiovascular risk factorsDetection and treatment of risk factorsEarly identification and treatment of heart attacks and strokesPrevention of recurrent cardiovascular eventsTABLE 2. Specific Indicators Established by AHA to Track Progress Toward Heart Disease and Stroke Prevention by 2010Reduction in death rate due to coronary heart disease and stroke by 25%Reduction in prevalence of smoking, high blood cholesterol, and physical inactivity by 25%Reduction in rate of uncontrolled high blood pressure by 25%Elimination of the growth of obesity and diabetes mellitusOpportunities and Approaches to Prevent and Manage Heart Disease and StrokeMeeting the HP2010 and AHA goals for preventing and managing heart disease and stroke is a challenging but achievable task. Heart disease and stroke are disorders with complex origins and multiple risk factors, so a multifaceted approach to their prevention is crucial to success. With this perspective in mind, the CDC and its key partners and stakeholders, including the AHA, the Association of State and Territorial Health Officials, and the National Institutes of Health (specifically, the National Heart, Lung, and Blood Institute and the National Institute of Neurological Disorders and Stroke) developed A Public Health Action Plan to Prevent Heart Disease and Stroke.22 This plan directly addresses the 4 national goals for heart disease and stroke prevention described in HP2010. The action plan includes an "action framework" (Figure) that serves as both a guide for heart disease and stroke prevention efforts and a useful framework for designing a surveillance system.22Framework development first required an understanding of the present CVD environment, in which unfavorable social and environmental conditions give rise to the adoption of adverse behavioral patterns that may lead to the development of the major risk factors for heart disease and stroke. Next, first events, many of which are fatal, occur in the population. Survivors are at risk for recurrent events, disability, decompensation, and death. In theory, prevention of heart disease and stroke could be advanced by intervening at any point in this process; however, meeting the 4 goals of HP2010 will require efforts across the full spectrum of cardiovascular health promotion and disease prevention. Prevention of the major risk factors for heart disease and stroke (goal 1) can be achieved only by addressing social and environmental conditions and behaviors. Detection and treatment of the risk factors (goal 2) can be achieved only through efforts that focus on these specific activities, although efforts to prevent the risk factors could, if successful, reduce the magnitude of the challenge inherent in this task. Early identification and treatment of acute events (goal 3) requires population-wide knowledge of symptoms and appropriate (timely) healthcare-seeking behavior, as well as uniform access to high-quality emergency care and acute case management. Prevention of recurrent events (goal 4) requires uniform access to high-quality health care, including rehabilitation services, for all survivors of an acute event. Understanding the strategies required to prevent heart disease and stroke also provides an important basis for considering the requisite scope of a comprehensive surveillance system designed to track progress toward the attainment of the prevention goals set by HP2010.Role of Surveillance in Efforts to Prevent and Manage Heart Disease and StrokePublic health surveillance is defined as "the ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding health-related events for use in public health action to reduce morbidity and mortality and to improve health."23 Comprehensive and accurate disease surveillance systems are critical to the success of efforts to reduce the burden of CVD and stroke. Such systems are particularly important in identifying emerging trends, such as the rise in prevalence of obesity, diabetes mellitus, and chronic (congestive) heart failure3,24; the plateauing of the decline in stroke mortality25; regional and subgroup differences in the decline in myocardial infarction incidence26; or the rise in hospitalizations for atrial fibrillation.27 Comparison of trends across subgroups also helps to identify groups at particularly increased risk28 or that fail to benefit from overall improvements in prevention and treatment.29,30 Reliable surveillance data are essential for identifying public health priorities, tracking the progress of preventive efforts, and intensifying efforts in areas of special need. Guidelines published by the CDC have suggested several criteria for evaluating public health surveillance systems, including simplicity, data quality, acceptability, sensitivity, positive predictive value, representativeness, timeliness, stability, usefulness, flexibility, and cost.23 Although a full review of this information is beyond the scope of this statement, key characteristics of reliable surveillance systems can be grouped into 3 areas: the validity of the data produced, the utility of the resulting information, and the feasibility of implementing the system itself.23,31 It is particularly important for the surveillance system to have sufficient flexibility and nimbleness to enable the incorporation of important new measures in a timely manner.Surveillance needs at various levels may serve different purposes, but all components of the system should be designed to best inform the strategies for preventing heart disease and stroke that are best implemented at that level. On the national level, surveillance systems should inform policies likely to be set nationwide, such as agricultural subsidies, federal tobacco taxes and other tobacco control policies, Medicare reimbursement for screening and treatment, practice guidelines promulgated by scientific and governmental organizations, and drug or device safety issues addressed by federal agencies. Nationally available data should also permit comparisons between countries, particularly because such comparisons can inform national health policy.Surveillance data are also critically important at both the state and local level. State and local public health agencies require relevant surveillance data, specific to their state or local area, to use in developing and seeking funding for targeted intervention programs, informing policy makers and guiding policy decisions, and planning and evaluating programs. For example, data are needed to inform state and local decision makers about the impact of current and future policies pertaining to school nutrition and physical education programs, tobacco taxes and other control policies, and Medicaid coverage policies, as well as other prevention programs. Because funding for heart disease and stroke prevention programs is low relative to the public health burden of these diseases in most states and local areas, public health agencies must carefully prioritize their preventive efforts and continually evaluate ongoing programs to assess and improve their impact. State or local populations at particularly high risk for CVD can be identified and targeted for intensive interventions that may not be feasible or efficient on a broader scale.28 State and local public health agencies cannot design, implement, and evaluate such programs without relevant, reliable, accurate, and timely surveillance data.Several trends are occurring that will influence surveillance capacity in the years to come. Modifications to the surveillance system should be designed to benefit from, or at least accommodate, the likely effects of these influences. The development of geographic information systems technology (eg, geocoding) has enhanced the utility of surveillance data for research, program planning, and evaluation purposes. The development of health information technology, especially the electronic health record, might contribute importantly to the development of improved insight into the processes and outcomes of healthcare delivery; however, standardization, interoperability, confidentiality safeguards, and the lack of mechanisms to link across data repositories are but a few of the barriers that must be overcome. The implementation of pay-for-performance healthcare reimbursement policies may also influence the availability of data on key performance measures that could be used to track progress toward the prevention and management of CVD. Finally, it is important to recognize that although the present report focuses on heart disease and stroke, enhanced surveillance of other chronic diseases could contribute further to our ability to make better decisions on resource allocation, thereby leading to improvements in the health of our population.HP2010 Goals 1 and 2: Risk Factor Prevention, Detection, Treatment, and ControlRisk factor prevention, detection, and control are addressed in the first and second of the 4 HP2010 goals relevant to heart disease and stroke. Because many components of a surveillance system to monitor risk factor prevention could also provide useful information about risk factor detection and control, surveillance efforts needed to monitor progress toward achieving these goals will be discussed together. Physical inactivity, unhealthy diet, tobacco use, obesity, hypertension, dyslipidemia, and diabetes mellitus are well known as the major modifiable risk factors for heart disease and stroke, and atrial fibrillation is a major risk factor for stroke.3,22 Programs that seek to reduce heart disease and stroke incidence, prevalence, and mortality through risk factor prevention, detection, and control must address some or all of these risk factors. Although success in changing current trends in heart disease and stroke incidence, prevalence, or mortality may not be seen for several years after efforts to prevent or control risk factors, program impact on the risk factors themselves may be seen in a shorter time frame, provided that good measures of program progress exist. For these reasons, surveillance systems to track the prevalence, treatment, and control of risk factors over time are needed at the national and state level, and ideally at the local level, as well. In addition, state-based heart disease and stroke prevention programs are working to create policy and environmental changes that will support behavior change and risk factor prevention and control.32,33 Therefore, surveillance systems are needed to monitor changes in relevant policies and environmental factors over time. The following sections address the availability of surveillance data relevant to policies and environmental conditions, the major lifestyle risk factors, and the major biological risk factors.Environmental and Policy FactorsTo support behavior change, risk factor control, and uniform access to high-quality health care, heart disease and stroke prevention programs must address policy, environmental, and systems-level changes in multiple settings (eg, communities, schools, work sites, and healthcare settings).22,33 Thi
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