EDUCATING COMMUNITIES ABOUT NEUROLOGIC DISEASE

EDUCATING COMMUNITIES ABOUT NEUROLOGIC DISEASE

Lewis B. Morgenstern, MD University of Michigan

Ann Arbor, MI

In the next several pages I hope to convince you of several points. The first is that educating the public about neurologic disease before they become sick is very important. The second is that the responsibility of initiating this process belongs with each one of us who completed a neurology residency. The third is that the process is quite specific, and relies upon sound, scientific principles of behavior change theory. Finally, educating our communities about neurologic disease is fun and quite rewarding. For most of my examples I will use stroke as the model neurologic disease. Educating the Public About Neurologic Disease Before they Become ill There are many tangible benefits to educating the public about neurologic disease before they become ill. It seems more readily apparent in some diseases than others. Stroke is an obvious disease where public education is critical, both for prevention and for acute stroke therapy. Many preventable behaviors and treatable medical conditions are now clearly associated with first ischemic stroke, and modification demonstrates reduced stroke risk1, 2. Clearly an informed public, given proper motivation, is more likely to reduce stroke risk factors than a public that is either under of mis-informed. Acute stroke therapy is dependent on timely arrival in the emergency department. Efforts to increase acute stroke therapy remain stymied in large part due to the lack of knowledge and motivation among the public about stroke3. A logical follow-up to the argument of educating the public about neurologic disease is to assume that targeting those at risk for neurologic disease is best. The advantage of this approach is efficiency and reduced cost. If the intervention to improve knowledge and motivation about acute stroke therapy was limited to just those with hypertension it would be easier than educating the entire citizenry. One could imagine all sorts of targeted interventions. A list of stroke warning signs and information about the effectiveness distributed with every prescription for anti-hypertensives as an example. The problem is that when someone has a stroke they are not the one who calls 911 for help. Indeed studies have shown that when a stroke occurs and 911 is called, in only 4.5% of the cases does the patient themselves make the 911 call4. Patients with aphasia, hemiparesis and anosagnosia don’t call 911. The targets, therefore, to get people to call 911 for acute stroke are witnesses. Who are they? The witnesses to stroke are family, friends, co-workers and bystanders. In other words, the entire community. Many other acute neurologic problems including status epilepticus, meningo-encephalistis, neurotoxicology and traumatic brain injury have similar reliance on the knowledge and motivation of bystanders to act quickly and appropriately. So, for reasons of prevention, early disease treatment and acute interventions, educating the public about neurologic disease before disease onset is a good thing. This is a very big task. There are several ways to approach the problem: using existing media resources, public service announcements (PSAs), legislation, advocacy and research. See table 1 for a summary of the pros and cons to each approach. Table 1: The Advantages and Disadvantages of Various Approaches to Educating the Public About Neurologic Disease. Medium Advantages Disadvantages Media High impact, free, respected Erroneous reports, whimsical PSAs Complete content control Low impact, costly Legislation High impact, permanent Slow process, whimsical, politicians Advocacy High impact, recognized personalities Whimsical, transient Research Content control, scientific Funding, transition to mainstream

The Media As table 1 states the advantages of the media is that it can reach a lot of people, does not cost anything and, generally, is respected by the public. The disadvantages include the potential for erroneous or incomplete reporting and the seemingly random nature of what reporters cover and what they do not. There is no doubt that the media can be friend or foe. Often the “spin” is to make disease look bad, and report on novel treatments early in their course of evaluation and far from approval5, 6. This does little to inform the public about currently available prevention and treatment options for neurologic disease. One study found that media reports on epilepsy were generally accurate, but as much as one third of stories were erroneous and over-reported the mortality risk from seizures. Exaggerated reports of new drug efficacy were common7. The goal for those of us that want to educate the public about neurologic disease is really to politely “manipulate” the media into providing public health information. Health reporters look for credible sources, access to experts, novelty and sensationalism in deciding whether to publish a study. One successful educational intervention project utilized the media by writing print stories and writing scripts for television radio health news8. Television is the most common source for health information in the United States5, 6. While it is clear what you should not say in talking with reporters6, it is perhaps equally important to discuss what should be said. In addition to conveying information about potential new developments, we have remarkable squandered opportunities to remind the public about the key facts of neurologic disease every time we talk with the media. When I talk with the media about research developments I insist that the article contain information on available treatments, their success, and the importance of seeking expert neurologic care. I entice the media to my story by convincing them of the novelty of the issue, my willingness to help them put the story together, the availability of one of my patients to provide the “human” side of the story, and the impact of my topic on a large segment of the population. While my press release may be about a specific topic, I never lose the opportunity to address the more important, broader issue, in my case, the availability and success of acute stroke treatment if 911 is called promptly. Public Service Announcements As table 1 points out the main advantage of PSAs over all other mediums for education is the ability to completely control the message content. Indeed, if you write, direct and produce a PSA, the content is totally yours. This differs vastly from the control exerted by reporters, politicians, celebrities and review committees, which make up the other options reviewed in table 1. PSAs offer the ability to educate the public through a scripted platform with a focused message. Television stations are required to air these spots, but usually they appear in the middle of the night when few people are tuning in. Again, the local station needs to be convinced that the PSA is tackling an important issue. Often, local community advocates can help here. PSA’s that feature local leaders or notable personalities may also achieve more air time. The message should be positive and motivational. Legislation As table 1 shows legislating educational and service issues for neurologic disease offers high impact in awareness, a source of funding and a sense of permanence. The drawbacks are the remarkable slowness of the process, the huge amount of work involved in pushing such an agenda through the political system, and the capricious nature of politicians. The STOP Stroke Act is a good example. After many years of planning the Act was put forward in 2002 and approved initially by both house and senate. It has since gone through numerous committees, but has failed to receive the requested budget to put forward the Act’s agenda. This agenda calls for funding for national education and patient resources. It would be a tremendous achievement for the neurologic community. Tremendous effort by individuals and advocacy groups has already gone into the Act. While there are relatively few neurologists there are many citizens with neurologic disease. These citizens, and their families, vote. This provides the basis for political muscle. The AAN has a strong advocacy agenda with an office in Washington. However, the thrust of the focus of many professional societies is providing protection for physicians’ interest and only indirectly patients. Since most states are currently financially troubled there is little money on the state side to sponsor legislation focused on education and treatment of neurologic disease. Advocacy Recently, high-profile advocacy in spinal cord injury and Parkinson’s disease have helped promote the educational and research agenda of neurologists. However, we have never come close to the advocacy in such

diseases as breast cancer or AIDS. While it is difficult (and inappropriate) to complain that one disabling and fatal disease is more deserving of media attention and financial contributions than others, it does give one pause to consider the relatively small amount of money in such fields as stroke and dementia compared to other high profile diseases. There is no easy explanation, but there are some ways to increase advocacy for neurologic disease. Advocacy involves utilizing a passionate individual to help educate the community about prevention and treatment of neurologic disease. The person does not need to be high-profile or famous, but it helps. The goals are to convince community members that some one like them or someone they respect feels strongly about this disease and the community well-being. The best advocates are those who clearly show their passion and have had successful, positive outcomes. We all need to identify these individuals. They are valuable on local and national levels. They help us spread the word. Those individuals with financial resources are obviously valuable for their ability to personally finance or recruit others to finance educational and research campaigns. It is never easy to ask our patients to give more of themselves to further these causes, but often they are more than willing, and their involvement in helping others is therapeutic. As table 1 addresses, advocacy, particularly by high-profile people on a national level gives critical universal recognition to disease. However, most people don’t like to think of tragedy. The best role models are not those who are disabled or die from their disease, but those that overcome adversity and earnestly want to help others do the same (see figure 1). Celebrities do and say what they wish. More than once, I have cringed in front of the television, when a celebrity, trying to do the correct thing, gets the message about neurologic disease quite wrong. There is no doubt that it is a partnership, but we as neurologists must step up to the plate, identify these individuals and help structured the message that they take to the media and the public. Research The last section of this syllabus will discuss research more in depth with an example. Research provides an opportunity to use the scientific discipline of Health Behavior and Health Education to craft a rigorous educational intervention aimed at prevention and/or treatment of neurologic disease. The key point here is that it is science that is guiding the development of the intervention. One fundamental mistake that is often made is that everyone feels that they know how to educate the public. As neurologists we know the message. However, the real challenge is in delivering that message so that it is adopted and used by the public. Partnering with Health Behavior and Health Education experts at local Schools of Public Health is a rewarding strategy. Grant monies are often available from local and state health departments. The federal government provides grants through the National Institutes of Health and the Agency for Healthcare Research and Quality. Table 1 states that the advantage of research is in content control and using science to craft the message. The disadvantages include the time and effort required to secure funding. A further limitation is transitioning between the funded research project and community implementation after the research project has ended. The Responsibility for Public Neurologic Education Begins with Us A central issue is who is going to do this? Most look to local, state and federal health departments to accept these responsibilities. I agree. However, they need help. We need to constantly remind these organizations of the need for public neurologic education. The cost of neurologic disease to society is enormous. We are the main advocates and knowledge base for diseases that attack the nervous system. If each neurologist took just two hours per month to advocate for more neurologic education through government and private organizations we would be in much better shape. We must be the leaders of this fight. The Specific Theory and Practice of Behavior Change As mentioned above there is a rigorous scientific discipline and guiding theories that help behavior change interventions. Table 2 reviews the key ingredients of these models8.

Table 2: Key components of Behavior Change Tactics

• Outcome Expectations--If Act ➨ Good

• Self-efficacy--Confidence to Act

• Perceived Norms--Community Standards

• Barrier Identification--eg. Impediments to the Behavior

• Behavioral Script--Recall Actions to do

• Symptom Knowledge--Recognize Symptoms

Outcome expectations are perhaps the most important ingredient in determining behavior change9. A person must believe that there actions will lead to a good result in order to promote that behavior. Most PSAs about stroke show a dark picture of death and disability and then provide the symptoms of stroke and the suggestion that 911 be called if such symptoms arise. Behavior theory would predict that these interventions will not be successful. The outcome demonstrated in these PSAs is death and disability, why would someone be promoted to call 911 for such a bad outcome? Instead, a picture of recovery with a clear message that effective treatments are available to those who call 911 early are more likely to be successful (see figure 1). Self-efficacy refers to one’s confidence that they can provide the necessary behavior when it is needed10, 11. In teaching first aid for seizure patients, giving family members the confidence that they can provide a safe environment for someone having a seizure and know when they must call for help for a prolonged seizure is crucial. Perceived norms reflect one’s likelihood of performing an act if they feel that their neighbor would act in a similar fashion. Using local community role models is crucial. Having someone who looks and acts like the target audience appear on camera and say, “I recognized my wife having a stroke and I called 911 immediately, they treated her immediately, and now she is well again. We are both so happy that I called immediately.” Barrier identification can be subtle. Two common barriers to getting people to call 911 for acute stroke are embarrassment and the need to call one’s primary care physician. Many people are embarrassed by having an ambulance pull up in front of the door. This can be addressed through modeling as discussed above or having paramedics describe their role in a friendly and welcoming fashion. Working with primary care physicians and health maintenance organizations to get patient’s at risk to call 911 immediately rather than call the office for stroke symptoms is important. Having a behavioral script memorized is also helpful. The mother of the seizure patient is much less likely to panic or shove something in her child’s mouth during a seizure if a simple behavioral script including injury prevention, observation and an appropriate threshold to call 911 is rehearsed and committed to memory. Symptom recognition is purposefully placed last in table 2. It is obviously a key ingredient. Without knowledge of the disease little can be done to recognize it, and prevent or treat the disease. However, many falsely believe that knowledge of the disease translates into the motivation to seek preventive strategies or treatment. The tactics mentioned above symptom recognition in table 2 are absolutely imperative to establish the motivation and prevent the denial that usually goes along with serious illness. There are several ways to incorporate these tactics into a rationally developed intervention plan. One such way is to use the process of Intervention Mapping12, 13. This strategy requires a carefully pre-specified plan of intervention using matrices that guide the intervention based on specific objectives and general strategies from table 1. There are several theories regarding behavior change. Social Cognitive Theory is one such construct that currently provides the framework for many educational intervention projects14. Social Cognitive Theory is also recognized as the fundamental theoretical basis for design of educational interventions targeted toward children15. This theory recognizes the integration of behavior, environment and personality factors in describing human

action. Cognition influences behavior, but may be enhanced or prevented by environmental influences. Personality factors including attitudes, beliefs and self-efficacy also influence behavior. Outcome expectations and the ability to analyze the consequences of behaviors are critical15-19. The Rewards of Educating Communities About Neurologic Disease I’d like to illustrate the rewards of educating a community about neurologic disease through a research example. The TLL Temple Foundation Stroke Project was developed to determine if a community and professional education project could increase appropriate acute stroke treatments in a non-urban community8, 20. The trial involved two communities, both in non-urban East Texas. One community served as the intervention community and one the control community. The project was divided into three phases, all with pre-specified varying time lengths. Phase I, February 1998 - October 1998, was observational and provided baseline data in both communities. Phase II, January 1999 - March 2000, provided education in the intervention community only. Phase III, April 2000 - September 2000, was observational and provided post-educational data in the intervention community and secular trend data in the comparison community. The educational intervention was designed using the process of Intervention Mapping13 to create a multilevel program that delivered a community communication campaign combined with professional development and organizational change. We created PSAs for both radio and television in English and Spanish. Community figures were used as role models to show calling 911 immediately for stroke symptoms, and to demonstrate that responding to stroke immediately can result in a better outcome. Community members were also encouraged to be assertive in asking the physician about TPA if taken to the ED for stroke symptoms. The PSAs were run on local television a total of 675 times. Radio PSAs aired 3,376 times. We utilized the “train the trainer” education methodology21. This method utilizes project health educator(s) to train civic and religious leaders who in turn train others at work, religious and other organizations. We conducted 488 trainings to provide 634 subsequent trainers to disseminate the message to 49, 527 individuals in person. Over 60,000 brochures on stroke were utilized and more than 5,000 posters (see figure 1) were displayed in the intervention community. All messages were positive, hopeful and did not use scare tactics. The principles of positive outcome expectations, self-efficacy, barrier removal and role modeling (peer norms) were coupled with symptom recognition. Large employers, hospitals, pharmacists, health clinics and places of worship were targeted.

Figure 1: Poster of a local well-known man who successfully received acute stroke therapy. The TLL Temple Foundation Stroke Project8. [Reprinted with permission from the publisher from Morgenstern LB, Staub L, Chan W, et al. Improving delivery of acute stroke therapy: the TLL Temple Foundation stroke project. Stroke 2002;33:160-166.]

The investigators were not present or available for any individual patient treatment decisions. The pre-specified primary outcome measure was a change in treatment of acute stroke patients with intravenous rt-PA from a presumed baseline of 1% to 6% in the intervention community. Similarly, we hypothesized that no increase in the use of acute stroke therapy would be observed in the comparison community. The primary outcome measure was the proportion of stroke patients treated with intravenous rt-PA, the only FDA approved acute stroke therapy. Table 3 provides the primary outcome results of the study. Table 3: Primary outcome data, proportion of ischemic stroke patients treated with intravenous rt-PA in the TLL Temple Foundation Stroke Project.

Phase I (N=424) Phase II (N=767) Phase III (N=238)

Community N % N % N % p* Intervention 3/136 2.21 23/266 8.65 9/80 11.25 0.007 Comparison 1/141 0.71 2/233 0.86 1/70 1.43 1.00

As you can see from table 3 the increase in FDA approved acute stroke treatment was highly significant in the intervention group, and sustained even in the six months following the end of the intervention (Phase III). There was no significant change in intravenous rt-PA treatments in the comparison community. Interestingly, there was no significant reduction in delay time to hospital arrival. This may be viewed as a failure of the community portion of the intervention, or the fact that distances to the hospital were so great in this non-urban community. Indeed, many physicians who elected to treat patients informed the investigators that their decisions were heavily swayed by patients and family members who had received the educational message, and brought newspaper articles, posters and brochures to the emergency department to encourage the physicians to use intravenous rt-PA. This indicates the tremendous interaction of educational interventions aimed at both professionals and the community. It is likely that the most influential part of the professional educational intervention in the TLL Temple Foundation Stroke Project was the community intervention itself. On a personal note, this research activity was highly rewarding for all involved. While we constantly heard of anecdotal success stories, the community was very appreciative. While no long-term follow-up was done, many of the physician-treaters became stroke champions and promised to continue to spread the word in the community. Lessons from Other Areas in Medicine There are several areas of medicine where public education has demonstrated marked benefit for chronic disease management and prevention of acute exacerbations. Asthma is the key example22. Asthma is a common, chronic disease with good preventive and acute treatments. The key is education to avoid environmental triggers, use prophylactic medication, and seek immediate attention for acute symptoms to avoid respiratory compromise23. Several studies have demonstrated benefits in these areas and suggest that similar approaches can be utilized for other diseases. Diabetes mellitus is similar in many ways22. Early detection is important, prevention and treatment are key. Public health intervention programs aimed at prevention of diabetic complications and glycemic control have demonstrated benefit and are now targeting high risk populations24. Conclusions and Future Directions Hopefully by this point you are convinced of the advantages of public education of neurologic disease. It is likely that the best interventions are multi-level and based on sound scientific principles20, 25. We need to do more to educate the public about what we do each day at work. This is critically important to diseases with acute presentations such as epilepsy, stroke and traumatic nervous system injury. To improve compliance and improve quality of life, public education is also beneficial for many neurologic diseases. The best means to achieve these goals are for all of us to work locally in our communities and nationally within the AAN and other professional advocacy organizations to educate the public about neurologic disease. The benefits are large and the rewards to us are equally positive. References 1. Goldstein LB, Adams R, Becker K, Furberg CD, Gorelick PB, Hademenos G, Hill M, Howard G, Howard

VJ, Jacobs B, Levine SR, Mosca L, Sacco RL, Sherman DG, Wolf PA, del Zoppo GJ. Primary prevention of ischemic stroke: A statement for healthcare professionals from the stroke council of the american heart association. Stroke. 2001;32:280-299

2. Pearson TA, Blair SN, Daniels SR, Eckel RH, Fair JM, Fortmann SP, Franklin BA, Goldstein LB, Greenland P, Grundy SM, Hong Y, Miller NH, Lauer RM, Ockene IS, Sacco RL, Sallis JF, Jr., Smith SC, Jr., Stone NJ, Taubert KA. Aha guidelines for primary prevention of cardiovascular disease and stroke: 2002 update: Consensus panel guide to comprehensive risk reduction for adult patients without coronary or other atherosclerotic vascular diseases. American heart association science advisory and coordinating committee. Circulation. 2002;106:388-391

3. Awareness of stroke warning signs--17 states and the u.S. Virgin islands, 2001. MMWR Morb Mortal Wkly Rep. 2004;53:359-362

4. Wein TH, Staub L, Felberg R, Hickenbottom SL, Chan W, Grotta JC, Demchuk AM, Groff J, Bartholomew

LK, Morgenstern LB. Activation of emergency medical services for acute stroke in a nonurban population: The t.L.L. Temple foundation stroke project. Stroke. 2000;31:1925-1928

5. Picard A. How can we improve medical reporting? Let me count the ways. Int J Health Serv. 2005;35:603-605

6. Stamm K, Williams JW, Jr., Noel PH, Rubin R. Helping journalists get it right: A physicians's guide to improving health care reporting. J Gen Intern Med. 2003;18:138-145

7. Krauss GL, Gondek S, Krumholz A, Paul S, Shen F. "the scarlet e": The presentation of epilepsy in the english language print media. Neurology. 2000;54:1894-1898

8. Morgenstern LB, Staub L, Chan W, Wein TH, Bartholomew LK, King M, Felberg RA, Burgin WS, Groff J, Hickenbottom SL, Saldin K, Demchuk AM, Kalra A, Dhingra A, Grotta JC. Improving delivery of acute stroke therapy: The tll temple foundation stroke project. Stroke. 2002;33:160-166

9. Finch EA, Linde JA, Jeffery RW, Rothman AJ, King CM, Levy RL. The effects of outcome expectations and satisfaction on weight loss and maintenance: Correlational and experimental analyses-a randomized trial. Health Psychol. 2005;24:608-616

10. Marks R, Allegrante JP, Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (part ii). Health Promot Pract. 2005;6:148-156

11. Marks R, Allegrante JP, Lorig K. A review and synthesis of research evidence for self-efficacy-enhancing interventions for reducing chronic disability: Implications for health education practice (part i). Health Promot Pract. 2005;6:37-43

12. Fernandez ME, Gonzales A, Tortolero-Luna G, Partida S, Bartholomew LK. Using intervention mapping to develop a breast and cervical cancer screening program for hispanic farmworkers: Cultivando la salud. Health Promot Pract. 2005;6:394-404

13. Bartholomew LK, Parcel GS, Kok G. Intervention mapping: A process for developing theory- and evidence-based health education programs. Health Educ Behav. 1998;25:545-563

14. Hobbis IC, Sutton S. Are techniques used in cognitive behaviour therapy applicable to behaviour change interventions based on the theory of planned behaviour? J Health Psychol. 2005;10:7-18; discussion 37-43

15. Kelder SH, Orpinas P, McAlister A, Frankowski R, Parcel GS, Friday J. The students for peace project: A comprehensive violence-prevention program for middle school students. Am J Prev Med. 1996;12:22-30

16. Nader PR, Sallis JF, Rupp J, Atkins C, Patterson T, Abramson I. San diego family health project: Reaching families through the schools. J Sch Health. 1986;56:227-231

17. Nader PR, Sallis JF, Patterson TL, Abramson IS, Rupp JW, Senn KL, Atkins CJ, Roppe BE, Morris JA, Wallace JP, et al. A family approach to cardiovascular risk reduction: Results from the san diego family health project. Health Educ Q. 1989;16:229-244

18. Orpinas P, Kelder S, Frankowski R, Murray N, Zhang Q, McAlister A. Outcome evaluation of a multi-component violence-prevention program for middle schools: The students for peace project. Health Educ Res. 2000;15:45-58

19. Reynolds KD, Raczynski JM, Binkley D, Franklin FA, Duvall RC, Devane-Hart K, Harrington KF, Caldwell E, Jester P, Bragg C, Fouad M. Design of "high 5": A school-based study to promote fruit and vegetable consumption for reduction of cancer risk. J Cancer Educ. 1998;13:169-177

20. Morgenstern LB, Bartholomew LK, Grotta JC, Staub L, King M, Chan W. Sustained benefit of a community and professional intervention to increase acute stroke therapy. Arch Intern Med. 2003;163:2198-2202

21. Orfaly RA, Frances JC, Campbell P, Whittemore B, Joly B, Koh H. Train-the-trainer as an educational model in public health preparedness. J Public Health Manag Pract. 2005;11:S123-S127

22. Warsi A, Wang PS, LaValley MP, Avorn J, Solomon DH. Self-management education programs in chronic disease: A systematic review and methodological critique of the literature. Arch Intern Med. 2004;164:1641-1649

23. Krieger JW, Takaro TK, Song L, Weaver M. The seattle-king county healthy homes project: A randomized, controlled trial of a community health worker intervention to decrease exposure to indoor asthma triggers. Am J Public Health. 2005;95:652-659

24. Two Feathers J, Kieffer EC, Palmisano G, Anderson M, Sinco B, Janz N, Heisler M, Spencer M, Guzman R, Thompson J, Wisdom K, James SA. Racial and ethnic approaches to community health (reach) detroit partnership: Improving diabetes-related outcomes among african american and latino adults. Am J Public Health. 2005;95:1552-1560

25. Kwan J, Hand P, Sandercock P. Improving the efficiency of delivery of thrombolysis for acute stroke: A systematic review. Qjm. 2004;97:273-279

EDUCATING COMMUNITIES ABOUT NEUROLOGIC

DISEASE

Lewis B. MorgensternUniversity of Michigan

Stroke Program

U of Michigan Stroke TeamStroke 2002;33:160

U of Michigan Stroke TeamArch Intern Med 2003;163:2198

U of Michigan Stroke Team

TPA Treatments 2006

! CMS Study—1.6% of Ischemic Stroke Patients within the Medicare Population Currently Receive IV TPA ! Insured More Likely to Receive Treatment

! Coverdell National Registry—4.3%! Range 2.5-9.6% by State! Not Population-based Hospital Selection


Early Efforts to Reduce Delay

! Alberts et al. Increased patients presenting within 24 hours from 39 to 85%

! NINDS TPA study -- 52% excluded for time

! Delay time needs to be reduced to <2 hours to efficiently treat with TPA


Factors influencing delay time: ++Major/studies agree; +Moderate/studies agree; +/-Studies disagree; -No effect. Factor Strength

No EMS Transport ++ Rapid Onset ++ Hemorrhage + Stroke Severity + Primary Care Physician + Motor Symptoms +/- Women +/- Previous Symptoms -


Behavioral Strategies

! Self-efficacy--Confidence to Act! Perceived Norms--Community Standards! Outcome Expectations--If Act " Good! Barrier Identification--eg. Calling PCP! Behavioral Script--Recall Actions to do! Symptom Knowledge--Recognize Stroke


Corpus Christi Survey MA

% NHW

%

p Value

? Stroke TX** 48 57 0.029

? Time Wind 46 54 0.001

Call 911 54 63 0.01

**No one said “TPA”


T.L.L. Temple Foundation Stroke Project Area

Intervention Area• Angelina County• Nacogdoches County• Shelby County

Comparison Area! Jefferson County! Orange County


Lessons From the Community

! Symptom Knowledge is not Enough

! Outcome Expectations and Self-Efficacy are Critical

! Education Must be Combined with Motivation


Who Gets Called When Stroke Symptoms Occur

EMS 163 (39.6%) No Call Made 129 (31.3%) Personal MD 66 (16%)Family member 28 (6.8%)Friend 3 (0.7%)Insurance Company 1 (0.2%)Does Not Remember 19 (4.6%)No Response 17 (4.0%)Other 3 (0.7%)


Who Called 911 N (%)

Self 7 (4.5)

Family Member 98 (62.8)

Paid Caregiver 30 (19.2)

Co-Worker /Other 21 (13.5)

Unidentified 7 (4.5)

One tail test for > 50% P = 0.0007


Background/Purpose

! Only a Small Minority of Stroke Patients Receive FDA Approved Therapy

! 61 Million U.S. Residents Live in Non-Urban Communities! Most Difficult to Target Acute Stroke Therapy

! 10 Outcome: Increase Proportion of Stroke Patients Receiving IV TPA


Methods

! Quasi-Experimental Design! Intervention and Comparison

Communities! Data Collection: Matched Hospital-Based! Intervention: Community-Based

! 24 Hour EDs/CT, EMS, Neurologists ! Systematic Process of Intervention

Development


Methods ! Phase I--Baseline--2/98-10/98

! Focus Groups, Needs Testing, Community Survey! Baseline Data Collection

! Phase II-Intervention--1/99-3/00! PSAs TV/Radio, Posters, Billboards, Print Media,

“Train the Trainer,” Protocols, Mock “Stroke Codes,” Lectures, Practice

! Intervention Data Collection

! Phase III—Post-Intervention—4/00-9/00


Methods

! Therapeutic Decisions Made by Local Physicians


Study Area Population Demographics

Intervention Area! Population of 151,973! 73% NHW, 17% AA, 9% HA! 66% <45 yrs

27% 45-74 yrs 7% 75+ yrs

Comparison Area! Population of 319,031! 64% NHW, 27% AA, 6% HA! 65% <45 yrs

28% 45-74 yrs

7% 74+ yrs


Intervention

! Community! Role Modeling! Mass Media: TV/Radio, News Stories,! Posters, billboards! “Train the Trainer”



Intervention! Professional

! Role Modeling! Barrier Removal ! Mock “Stroke Codes”! Newsletters! Feedback! Academic Detailing! CME Lectures


Intervention

! 488 Trainings Led to 49,527 Personal Messages

! 60,000 Stroke Brochures Used! 5,000 Posters Used! TV PSAs Run 675 Times! Radio PSAs Run 3376 Times! 5 Billboards


Results

! Subjects (N=1736):! Phase I (N=677)

! Intervention (N=349)! Control (N=328)

! Phase II (N=1059)! Intervention (N=544)! Control (N=515)

! Phase III (N=289


TPA Treatments—Ischemic

County Phase I Phase II Phase III p Value(N=277) (N=499) (N=150)

COM 0.71% 0.86% 1.43% 1.00

INT 2.21% 8.65% 11.25% 0.01


TPA Treatments—Candidates

County Phase I Phase II Phase III p Value(N=37) (N=58) (N=18)

COM 7% 6% 20% 1.00

INT 14% 52% 69% 0.0007


DT--Proportion <2 Hours

County Phase I Phase II Phase III p Value

COM 21% 28% 23% ns

INT 28% 32% 29% ns


DT--Mean (hours)

County Phase I Phase II Phase III p Value

COM 10.9 6.8 10.7 ns

INT 9.1 4.5 8.7 ns

U of Michigan Stroke Team0% 20% 40% 60% 80% 100%

Ph I-Int

Ph II-Int

Ph III-Int

Ph I-Com

Ph II-Com

Ph III-Com

Treat

HDUNK


TPA Treatments! Phase I:

Intervention-- 0/3 Protocol violations (0%) Control-- 0/1 Protocol violations (0%)

! Phase II: Intervention--3/23 Protocol violations (13%) Control-- 0/2 Protocol violations (0%)

! Phase III:Intervention-- 1/9 Protocol violations (11%)Control-- 0/1 Protocol violations (0%)


Conclusions

! An Increase in FDA Approved Acute Stroke Therapy is Possible Even in a non-Urban Community

! A Scientifically-Based Multi-Level Intervention is Necessary

! Knowledge Must be Coupled with Motivation


Limitations

! Non-randomized Design

! Hospital-based Data Collection

! No Outcome Data

! Single Community Pair


Acknowledgement

! Funded by the TLL Temple Foundation


The TLL Temple Foundation Stroke Project

Lewis Morgenstern, Principal Investigator

James GrottaKay Bartholomew Wenyaw ChanTheodore Wein Andrew DemchukLara Staub Susan HickenbottomRobert Felberg Mary KingJanet Groff Scott BurginAnjali Kalra Kamal Saldin

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EDUCATING COMMUNITIES ABOUT NEUROLOGIC DISEASE