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Improving the Chain of Recovery for Acute Stroke in Your Community: Task Force Report

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December 12-13, 2002

Task Force Report
Increasing Public Recognition and Rapid Response to Stroke

Lewis B. Morgenstern, M.D.
Task Force Chair
University of Michigan Health System
Ann Arbor		   Marc Eckstein, M.D.
University of Southern California Medical Center
Los Angeles
 
Wayne Rosamond, Ph.D.
Task Force Co-Chair
University of North Carolina
Chapel Hill		   Scott Kasner, M.D.
University of Pennsylvania
Philadelphia		  
 
Mark J. Alberts, M.D.
Northwestern University
Chicago		   Russell Luepker, M.D.
University of Minnesota
Minneapolis
 
L. Kay Bartholomew, Ed.D., M.P.H.
University of Texas Health Science
Center at Houston		   Karen Rapp, R.N.
University of California at San Diego
 
Alfred S. Callahan III, M.D.
Neurologic Consultants
Nashville		    

Improved in-hospital care and the advent of time-dependent treatments for stroke have increased the value of reducing delays from the onset of symptoms to acute stroke therapy. Delay to treatment can be generically divided into several components: (a) pre hospital patient delay (the time from symptom onset to contact with the health care system); (b) transport time (time from initial contact with the health care system to hospital arrival); and (c) in-hospital delays in diagnosis and treatment. The longest of these is usually pre hospital patient delay, which ranges from a median of 3 to 6 hours (1).

Pre hospital patient delay for stroke has been well studied with generally consistent findings. The patient or a witness must recognize the seriousness of the condition, decide to seek help, and arrange transport to a hospital, preferably by ambulance. Age, education, access to medical care, and co-existing medical conditions are not associated with pre hospital delay. Gender, ethnic group, and severity of symptoms do predict delay. Patients with prior stroke or TIA do not get to the hospital faster than patients who have not experienced a prior event.

Reasons for delay are found in denial, attempts at self-treatment, mild and/or variable symptoms, living alone, and the incapacitation that accompanies stroke. In addition, even when knowledge about stroke is present, the skills and motivation to take action are frequently missing in the stroke victim and those around him or her. It is apparent that action by a witness - whether a relative, co-worker, or bystander - significantly reduces delay. It is also well recognized that the use of emergency 911 reduces delay to treatment. Much is known about pre hospital patient delay in responding to symptoms of stroke. This knowledge could be used to guide a public information program aimed at improving awareness and inspiring appropriate action resulting in more timely access to medical care.

Lessons from Acute Myocardial Infarction (AMI)

Much of the experience in reducing delay to hospital presentation with an acute episode of a chronic illness comes from experience with AMI. The problems faced with reducing pre hospital patient delay in AMI were similar in many ways to those faced with stroke. Various public and private agencies have worked for nearly 40 years to reduce delay to AMI treatment. A single symptom and action message has been promoted (chest pain, act fast, call 911) with varying intensity and frequency. The result is that most adults, more than 90 percent, recognize persistent chest pain as the critical symptom. More than 80 percent recognize that calling 911 for ambulance transport is the appropriate behavior. Patient delay times have fallen from about 210 minutes in the 1980s to 140 minutes in the early 1990s. Some recent studies suggest that in the mid to late 1990s, improvements in patient delay stalled.

Public campaigns to reduce pre hospital delay and increase use of 911 emergency medical services in AMI allowed researchers to gain considerable experience in what works. A 1-year education campaign in Sweden was associated with a significant reduction in median delay time from 3.0 hours to 2.3 hours among patients with confirmed AMI. Another public campaign in Switzerland was associated with a similar reduction of median delay time from 3.3 hours to 2.6 hours for those with confirmed AMI. More modest reductions in delay time were found in a study in King County, Washington, where median delays of 2.6 hours at baseline were reduced slightly to 2.3 hours following a media campaign. The REACT study - Rapid Early Action for Coronary Treatment, sponsored by the National Heart, Lung, and Blood Institute - was the largest effort, involving 20 cities and more than 2 million residents. Residents of ten cities participated in an 18-month educational program and were compared to residents of ten control cities not involved in the educational program. The baseline patient delay identified by the investigators was lower than expected and the trend of declining delay in the control cities was larger than expected. Subsequently, the study failed to show significant reductions in this baseline in response to the intervention strategies tested. Each of these programs used a wide selection of techniques, ranging from face-to-face education to mass media campaigns. All of the programs tested various messages to build knowledge and skills in both high-risk individuals and the general public.

Experience with AMI suggests that a program to reduce pre hospital delay should (1) deliver a clear and simple educational message that teaches stroke knowledge and skills for action, including the use of 911; (2) emphasize the role of witnesses in getting help for the victim; (3) target both the general public and high-risk individuals; (4) be intense and sustained; and (5) involve multiple media methods to reach all segments of society.

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Lessons from Acute Stroke

There is limited experience with interventions to reduce delay time from onset of stroke to delivery of acute stroke therapies. In the mid 1980s in Durham, North Carolina, a public and professional education campaign to reduce time from onset of stroke symptoms to arrival at a hospital emergency department was implemented (2). During the pre-education phase 37 percent of stroke patients presented to the emergency department within 24 hours of symptom onset. This percentage was increased to 86 percent during the post-intervention phase. The Temple Foundation Stroke Project demonstrated an increase in the use of intravenous t-PA from 2 percent to more than 11 percent of ischemic stroke patients in rural East Texas (3).

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The Key Message

The message for the public should be clear, crisp, tailored, and sustainable. The essential elements of the message should be symptom recognition, immediacy (every second counts), and a call to action (using 911). It must also include a positive message that there are available treatments in order to motivate individuals to activate emergency medical services.

Examples of messages that have been promoted include a message developed by the National Institute of Neurological Disorders and Stroke: Know Stroke. Know the Signs. Act in Time. The University of Cincinnati's education program, FAST (face, arms, speech, time), attempts to simplify stroke recognition and action. This program needs to be validated for community use. To maximize its effectiveness, any public education program to disseminate a message should be developed in cooperation with professionals involved in public communication and public health education.

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Knowledge and Motivation

The stroke chain of recovery begins with the rapid identification of stroke symptoms by the patient or a bystander during the pre hospital phase. The majority of pre hospital delay occurs while the patient or those around the patient are deciding whether or not to seek care. Accurate knowledge and directed motivation are essential components of this decision-making process. Both should be targets for improvement if progress is to be made in reducing pre hospital delay.

A key factor responsible for the low proportion of stroke patients obtaining timely medical care is a poor understanding of stroke symptoms. A poor knowledge of the warning signs of stroke has been reported in studies of stroke patients and in surveys of the general population (4). Current programs by the American Stroke Association and others are important and necessary first steps toward making advances in improving the overall awareness of stroke symptoms.

Knowledge of stroke symptoms alone, however, is not sufficient to reduce pre hospital delay time. We know that calling 911 is a major factor in reducing pre hospital delay, as well as in-hospital delay, among stroke patients (5). Special attention should be given to overcoming barriers to calling 911 (e.g., concern for cost, embarrassment) and to reinforcing this behavior in the community. Furthermore, knowledge of symptoms among stroke patients has been shown not to be associated with increased use of emergency medical services. In fact, patients with better than average knowledge of stroke symptoms and who reported having previously received information about stroke symptoms are less likely to use emergency medical services than those with a lower level of awareness (5). It is clear that there are factors in addition to knowledge that underlie the public's response, or lack of response, to stroke symptoms. A heightened sense of urgency together with knowledge of stroke symptoms may interact to stimulate rapid response. Knowledge alone is not sufficient to effect real change in pre hospital care-seeking behavior among stroke patients or those who may witness the onset of stroke symptoms.

A public education effort about stroke symptoms that does not address the motivation or call-to-action component of care-seeking behavior may fall short in reducing pre hospital delay. Programs that fail to consider the social/environmental context of the person who suffers a stroke may also be ineffective, as many stroke patients are aphasic and it is frequently others who initiate a call to a medical professional for acute stroke care.

New approaches to instilling a higher sense of urgency around stroke symptoms are needed. The best approach will be one that communicates messages designed to translate knowledge into action. The most effective tactics to achieve this goal, however, are often debated. No single promotion and advertising campaign is effective in all environments. Whether the approach is soft or hard edged, the nature of the problem calls for more emphasis on the call-to-action behavior and the emergency nature of stroke symptoms.

One important strategy may be to specify possible determinants of these behaviors. From a social cognitive perspective, these determinants include knowledge of exactly what to do and how to do it (behavioral capability); confidence in one's ability to do the behaviors (self-efficacy); and belief that response to stroke symptoms will result in a better outcome (positive outcome expectation). Further, the bystander probably has to surmount the social discomfort of intervening in response to someone else's symptoms. Finally, the public should have some access to vicarious reinforcement (seeing others rewarded for taking action) by an affirmative response from transport and emergency department professionals.

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Who is Responsible?

All stakeholders in acute stroke treatment bear the responsibility of leadership. Responsibility for getting stroke patients to the hospital in time for acute stroke therapy is therefore shared by patients, their families, doctors, nurses, hospitals, and insurance companies, as well as by governmental agencies. A dual approach - one from national organizations and one from the grass roots level - is required to accomplish these goals. Grass roots efforts should focus on advocating for increased funding and developing local education programs and systems. Health care providers and their facilities can use their position of responsibility to serve the public and to work toward improving their communities' health. They should offer the best available therapies to all their citizens and reach out to them in an active manner. It is not enough simply to have a protocol in place for treating patients who are eligible for acute stroke therapy.

The national level organizations such as the NINDS and its partners can take a leadership role in developing national initiatives, influencing policy, and providing funding. Directors of specialty care and governmental departments of public health/national policy should work to infuse a sense of importance into stroke care and a sense of urgency about its execution.

A sense of partnership and shared responsibility is most likely to provide a platform for progress and advancement in the short term. To be successful, strong central leadership has to have widespread support from all stakeholders. An informed public can do much by demanding better care as well as actively participating in a system of organized stroke care. Once a hopeful outlook is engendered, it is expected that earlier recognition of symptoms will bring more patients to the hospital for treatment. The creation of hope in each community is necessary for any system to provide care. Each member of the health care community bears responsibility for transmitting the message that successful treatments for stroke exist.

Generating a sense of importance, developing a language, and continually transmitting a hopeful outlook are the fundamental forces to be created, tailored to each community, and guided to successful conclusion. The public, health care providers, facilities, agencies of education, government, and organized medicine all share responsibility for providing the benefits of stroke care to each citizen.

The cost of a sustained public and professional educational program will be substantial. Funding for such programs will require support from public, private, and non-profit organizations.

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Integration of the Community and Health Care Providers

The interaction and integration of the public with health care professionals is a key step towards improving the recognition of and the response to stroke. This requires an intricate communication chain between health care providers, health care office personnel, pharmacists, emergency medical personnel, all other allied health providers, and the public. In addition, work sites and public education facilities such as schools should be included as important forums for educating the public about rapid response to stroke.

Ideally, health care providers screen individuals for risk factors that could lead to cerebrovascular disease and use this opportunity to teach their patients about prevention. It is also incumbent upon health care providers to make maximum use of patient interactions as a venue for education about acute stroke, its symptoms, and the need for emergent action. The office setting, including the waiting area, provides one potential environment in which the public may be educated in this regard. While waiting to see a provider, patients who are already interested in their own health may learn from posters, videos, and other available teaching materials. Although this may not be an efficient strategy for primary prevention in a relatively healthy population, it might be quite effective in patients with risk factors for vascular disease, those with pertinent family histories, and those with prior TIA or stroke. All of the vital stroke messages can be delivered in this setting, with encouragement to discuss these issues in greater detail with the health care provider at the actual visit. In effect, this approach also allows for patients to motivate office-based health care providers to educate them.

Medical office personnel are often the first to receive a patient call about an acute problem such as a stroke. As such, the staff can significantly facilitate or obstruct emergent care. In the acute setting of a phone call from a patient (or family member) who may be suffering a stroke, these staff serve in the same capacity as emergency medical services dispatchers. Health care providers must educate their staffs about the key stroke messages, most importantly the need to call 911. Simple tools such as an answering machine in a primary care physician office that directs patients who call regarding stroke-like symptoms to call 911 may give the right message to the right person at the right time.

Pharmacists play a potential role in augmenting patient awareness and modifying patient behavior, as they often provide supplemental information that reinforces prior learning from the health care provider. This supplemental information could be expanded to include stroke messages when appropriate. This could occur by direct conversation, but could also be communicated by including printed information in, or actually printed on, the pharmacy bags.

Since the advent of acute stroke therapy, significant resources have been focused on educating the emergency medical services community and emergency department personnel about the time-critical nature of stroke treatment. Emergency medical services and emergency department personnel can also play a critical role by altering the behavior of patients and hospital-based health care providers. For example, upon arrival at the scene, emergency medical services could inform the patient (and/or family) that the diagnosis may be stroke and that rapid evaluation and treatment could dramatically help. Information (both verbal and written) could be provided immediately to the patient and/or family to initiate the urgent educational process. Further, upon arrival at the hospital, emergency medical services could accelerate the reaction of the health care providers by asking specifically if the patient is eligible to receive acute stroke treatment.

Communication can also flow from the public to health care providers. Patients expect that they will receive the most appropriate care at every hospital. However, they could catalyze the action of triage personnel and health care providers by asking explicitly for "immediate treatment with the best appropriate therapy for me," or even asking emergency medical services to take them to the "best hospital for stroke."

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The Cost-Effectiveness Issue

There is a paucity of data on the cost-effectiveness of public and professional educational programs. Although we do not have adequate data to say that expenditures to advance the public's awareness of stroke are cost-effective in reducing morbidity or morality from stroke, this should not prohibit public health action. The costs associated with the disability and rehabilitation from stroke are staggering, both in individual suffering and in financial terms. Designing and implementing initiatives that increase the likelihood that persons experiencing stroke-like symptoms will obtain medical care in a timely manner is a public health strategy that has sound backing from a chronic disease secondary prevention perspective.

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Measuring Success

More than 600,000 Americans suffer stroke each year, but few directly benefit from the acute treatments available. One goal should be for patients to immediately recognize and respond to stroke. We recommend a target of increasing the percentage of stroke patients arriving at the hospital within 3 hours to 50 percent by 2008 and to 70 percent in 2013. The success of efforts to improve public response should be measured in the numbers of stroke patients arriving early at emergency departments, not only in the number of patients treated with thrombolytics. Other intermediate measures of success are needed to guide the refinement and implementation of effective education programs.

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Special Populations

Public recognition of stroke must include each and every segment of the population. Certain segments may be most vulnerable to suffering a stroke, while others may require specialized educational interventions. In addition to high-risk patients with traditional cardiovascular risk factors, other groups such as minority groups, women, elderly adults, children, and rural populations require special focus. Furthermore, different populations have different educational needs and capabilities. The messages to each target group must be culturally sensitive and delivered through means tailored to each group. If a public education message reflects that group's perspectives and customs, it is more likely to be well received and to translate into behavioral changes, which will subsequently lead to a reduction in death and disability from stroke.

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Children

A long-term strategy for improving rapid recognition of stroke includes enhancing health education for children and including the time-urgent nature of stroke along with strong primary prevention. This may serve as a basis for lifelong knowledge about stroke prevention and treatment. It may also enable children to activate the emergency health care system if a family member suffers a stroke.

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Women

More women than men die each year of stroke. Women are more likely to present with so-called non-traditional stroke symptoms, such as an altered level of consciousness or confusion, pain, or disorientation. Since these signs and symptoms are not usually associated with stroke, women must be particularly vigilant so that whenever they experience any stroke symptoms, they immediately seek medical attention.

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Minority Groups

Certain minority groups are at particularly high risk for suffering acute stroke.

The frequency of stroke and stroke-associated mortality is higher in blacks and Hispanics than in non-Hispanic whites. Concerted educational efforts must be targeted toward these groups in a way that is supportive, culturally appropriate, and empowering.

While the goals and overall message of public education for stroke recognition are homogeneous, in order for the messages to be effective they must be delivered to many diverse groups in our society in a language that is understood by the intended audience.

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Conclusions

The Public Recognition Task Force members make the following recommendations:

  1. To improve rapid recognition of stroke, a multilevel intervention (sponsored in a collaborative fashion by health care organizations, communities, and government) is needed.
  2. Key stroke messages should be intense and sustained.
  3. Knowledge of symptoms alone is not sufficient to improve patients' rapid access to care. Education must combine knowledge and motivation for an immediate response to stroke symptoms.
  4. The target audience for improved knowledge and elevated motivation for action should be defined as all members of the public, not just individuals at high risk of stroke.
  5. Special attention for such interventions should be given to high-risk groups.
  6. Areas for additional research that should focus on demonstrating efficacy of health-behavior interventions include:
    • Cost effectiveness
    • Sustainability
    • Outcomes
    • Reaching special populations

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    REFERENCES

    1. Evenson K, Rosamond W, Morris D. Pre hospital and in-hospital delays in acute stroke care. Neuroepidemiology 2001;20: pp. 65-76.
    2. Alberts MJ, Perry A, Dawson DV, et al. Effects of public and professional education on reducing the delay in presentation and referral of stroke patients. Stroke 1992;23: pp. 352-356.
    3. Morgenstern LB, Staub L, Chan W, et al. Improving delivery of acute stroke therapy: the TLL Temple Foundation Stroke Project. Stroke 2002;33: pp. 160-166.
    4. Pancioli AM, Broderick J, Kothari R, et al. Public perception of stroke warning signs and knowledge of potential risk factors. JAMA 1998; 279: pp. 1288-1292.
    5. Schroeder EB, Rosamond WD, Morris DL, et al. Determinants of use of emergency medical services in a population with stroke symptoms: the second Delay in Accessing Stroke Healthcare (DASH II) Study. Stroke 2000;31: pp. 2591-2596.

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    National Institute of Neurological Disorders and Stroke
    National Institutes of Health
    Bethesda, MD 20892

Last updated July 15, 2008