NINDS: Stroke Proceedings: Todd

Proceedings of a National Symposium on
Rapid Identification and Treatment of Acute Stroke
December 12-13, 1996

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Lessons From Current and Previous Stroke Public Education Campaigns

Harold W. (Pete) Todd
National Stroke Association, Englewood, Colorado

In light of the recent approval of t-PA for the treatment of acute ischemic stroke, the subject of public education about stroke has assumed an even larger significance. We have always known how important public education is, but it is especially critical now, considering the temporal and logistical limitations that accompany the use of a drug like t-PA. Patients are eligible for treatment only within a narrow window of time after symptom onset, and patients in some parts of the country do not yet have access to the drug and the screening tests required for its use. Therefore, the challenge we face is that public education, defined as the conventional one-way transmission of information, is necessary but will not be sufficient for this particular campaign.

Achieving effective stroke prevention and treatment will take more than the latest medical advances. To draw an analogy, our current situation is equivalent to having a classy, modern airplane without any onboard navigation system. The technology for acute treatment of most ischemic strokes exists, but it will not achieve its full potential until the proper conditions are in place.

Public education is the best tool we have to put these proper conditions in place. It is the navigation system that will guide the country in fully and appropriately using technological advances like t-PA.

Establishing the importance of public education among ourselves is the easy part. Instituting a campaign that conveys that importance to the general population is a different matter altogether. If a campaign is to be waged, several questions need to be asked regarding its planning, execution, and evaluation. Who are we trying to reach? How do we go about reaching them? What exactly are we trying to teach them? And, perhaps most important, how do we structure our education efforts so that we ultimately change behavior?

The following are some representative activities that the National Stroke Association (NSA) has undertaken or observed during the last few years. I believe we can draw some overarching lessons from them.

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• Stroke Prevention Project
• Clinical Trials Acceleration Program
• Gallup Surveys
• Conclusions and Recommendations

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Stroke Prevention Project

In May of 1995, the NSA conducted its Stroke Prevention Project as part of the activities associated with that year's Stroke Awareness Month. Educational seminars were held in five cities--Minneapolis; Tampa; Washington, DC; Lexington, Kentucky; and Pittsburgh--with participants drawn by stories featured in local television, radio, and newspapers. The purpose of the seminars was not only to educate those who attended, but to gauge the effectiveness of our message.

Each participant responded to a survey prior to the start of the session. This survey provided a benchmark to measure the participants' knowledge about stroke. A local neurologist and an NSA board member (Jacquelyn Mayer Townsend) then spoke to the attendees about risk reduction and symptom recognition. Once the seminar was finished, participants were asked to complete another survey, which measured how much they had learned.

Through media placement and the wording on our advance press release, we targeted people over the age of 50 because of their greater stroke risk. While our seminar certainly succeeded in that respect, a disproportionate number of women and Caucasians attended. Roughly nine in ten who attended were white, and seven in ten were women. How this composition affected the data is uncertain.

As for the results, what we found was mildly encouraging. Beforehand, only 8.5% said they knew "a lot" about strokes. When the same question was posed to respondents after the seminar, 70% said they knew "a lot" about stroke.

The level of knowledge about the factors contributing to stroke also increased significantly as a result of completing the seminar. This was especially true for factors such as heart disease (38.2% in the preseminar survey compared to 72.6% in the postseminar survey), diabetes (32.8% compared to 83.5%), and excessive alcohol consumption (42.1% compared to 76.9%).

What did we learn? While we must be cautious about drawing firm conclusions, the fact that a self-perceived void had been (at least) partially filled in a short time was not a trivial result. This project also suggests that more follow up and analysis are required if we seek to reliably measure learning outcomes and levels of awareness.

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Clinical Trials Acceleration Program

The Stroke Prevention Project was encouraging in that it showed an increase in knowledge levels, but it didn't answer the larger and more important question, "Will it change behavior?" Although there is no conclusive evidence, results acquired through selected studies and NSA's Clinical Trials Acceleration Program (CTAP) seem to indicate that education can make a difference.

Thus far, CTAP has provided more than 300 site hospitals with training, consultation, and the tools to implement an education campaign. Hospitals armed with this information proceed with the next step--teaching the public about symptom recognition and the need for rapid treatment.

This educational push has translated into some heartening results in participating hospitals. In clinical trials held in conjunction with the NSA, patient goals were met three to five times faster than in studies that did not use the same strategies and educational resources. The best evidence for this comes from one trial that enrolled patients from 17 NSA-supported sites and 18 non-NSA-supported sites. Over a 12-month period, a total of 43 patients had been enrolled, 35 of whom came from the NSA-supported sites and eight of whom came from the non-supported sites.

At Duke University, Dr. Mark Alberts and others found similar results during an initial trial of t-PA. They hypothesized that educational efforts aimed at the public and health care professionals may increase recognition of stroke symptoms and reduce patient delays in seeking health care. The Duke study undertook public education through a multimedia approach. Local television, radio, and print stories focused on the use of t-PA for acute stroke and the need for early treatment. Physicians and other health providers were approached through special training, seminars, and correspondence. These medical professionals found that after their educational efforts, more than 85% of patients with cerebral infarction presented to their facility within 24 hours of symptom onset, compared with less than 40% prior to the start of the program.

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Gallup Surveys

This year, the NSA took a broad look at the impact of our education efforts by conducting a national Gallup poll on stroke. This poll was similar in structure and content to a Gallup poll we conducted in 1991. The idea was that a comparison of the two surveys should give us a reliable indication of how stroke awareness and knowledge had changed over the course of 5 years.

While these polls don't directly fit under the heading of an "educational campaign," they do provide us with some baseline numbers against which we can compare other results. The numbers are also notable because they draw on a large random sample of respondents, and may therefore be an accurate reflection of the level of stroke knowledge in this country.

The Gallup polls showed us that stroke remains a mystery to many people. Americans had difficulty in identifying conditions that put them at risk for stroke. Only 35% of those surveyed in 1991 could identify hypertension as a risk factor, a number that had improved to 43% by 1996. We also found that less than 20% of people in 1996 knew that other risk factors such as smoking, high cholesterol levels, and obesity contribute to stroke. Symptom recognition has improved, but it is still limited. The 1996 poll indicated that only six in every ten adults over the age of 50 knew that weakness or numbness is associated with stroke. Even more sobering, just 15% of those surveyed identified dizziness and 12% named severe headaches as symptoms.

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Conclusions and Recommendations

Obviously, the cases I've cited here are not exhaustive, nor is the NSA the only organization involved in stroke and stroke-related public education. The American Heart Association, the National Institute of Neurological Disorders and Stroke, and many other private, charitable, corporate, and governmental agencies have a strong track record in this area. I invite their representatives to comment on, broaden, or even dispute my conclusions or recommendations. That dialogue will be more useful than any single presentation.

I believe the public education landscape contains some good news and some bad news. The good news is that we know from other well-executed campaigns that education can substantially change both knowledge and behavior. I would cite education campaigns on AIDS and breast cancer as two prime examples. Moreover, the Gallup results demonstrate significant improvement in most areas of stroke awareness. However, they also prove we still have a lot of work to do.

The more significant bad news, as I see it, is that we don't seem to have a firm handle on what works, with whom, and why. Gallup results are certainly useful, but they are blunt instruments for fashioning education strategy. Our CTAP results, though significant, may be too anecdotal for us to draw conclusions about an entire population or discrete segments of that population.

Worst of all, some studies (notably an analysis of many other studies conducted to assess factors influencing presentation time by heart attack victims) suggest that even complete and accurate knowledge doesn't necessarily translate into appropriate behavior. In view of the numbers of Americans who still smoke cigarettes, this conclusion shouldn't surprise us, but it is still discouraging to those of us who are trying to lead our fellow citizens toward healthier lifestyles and to quick action if stroke symptoms appear.

This brief analysis leads me to one overarching recommendation. I believe all of us would benefit from some new sophisticated research on behavior modification and/or a compilation of any research that has already been done. Many of my colleagues and I have seen no specific link between such research and nationwide public education. A digest of effective methodology and techniques would be an enormously useful departure point for future education efforts.

Once that step has been taken, I believe the agencies involved in the stroke initiative should use the results of that research to mount a coordinated national campaign focused not simply on transmitting information as most of us do now, but rather on changing behavior in target populations. We think we're doing that now, but our results suggest we need a new approach. Perhaps the beginning of that new approach will spring from the ideas and recommendations found in this monograph.

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Last Edited: July 01, 1999

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