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The Importance of Patient and Public Education in Acute Ischemic Stroke


Judith Spilker, R.N., B.S.N. (Session Chair)
University of Cincinnati Medical Center

Efforts to change the perception of stroke from that of an inevitable and untreatable occurrence to that of a treatable medical emergency fall into two categories. The first focus of change is to maximize the ability of the medical system to recognize and appropriately treat stroke patients urgently. This approach has been described at length elsewhere in this monograph and was used successfully to recruit patients in the recent NINDS t-PA Stroke Study. Patient recruitment in that trial was considered a success. However, exclusion data from the trial indicate that of the more than 17,000 patients evaluated at an emergency department (ED) within 24 hours of symptom onset, only 3.6% were eligible for treatment (1). Using a similar measurement, the goal for emergency system reorganization could be to increase urgently treatable acute ischemic strokes to 10% of those presenting within 24 hours of symptom onset.

The second and perhaps most challenging focus of change is to educate the general public to better utilize the health care system in response to acute ischemic stroke symptoms. A review of the literature describing stroke presentation (Tables 1 and 2) demonstrates vividly that the majority of the general public does not seek health care immediately in response to stroke symptoms. Many of the specific factors that cause delays in seeking emergency care will be discussed in the papers from the Public Education Panel in this monograph. Identifying these factors and applying the principles of reaching large audiences with an appropriate message represent the "work" of patient and public education professionals. A proposed goal for this second focus would be to increase to 15-20% the rate of urgently treatable stroke patients seen in the ED (an additional 5-10% over the increase projected with emergency system reorganization alone).

Some caution needs to be used in interpreting these targeted goals. The time-frame for evaluating the goals may be different depending on the targeted strategy. Measuring the effects of emergency system change could probably begin as soon as possible. This would allow for some collection of baseline data. Experts in community education, however, will argue that, although patient behaviors can be changed, the process is slow. It would be appropriate to measure the effects of educational programs 3-5 years after they have been put into place. Another factor to be considered when establishing targeted goals and time-frames for their evaluation is the possible future development of additional stroke therapies with broader time windows for treatment.

Using the number of treatment-eligible patients as a measure of success in education campaigns has already been done for other diseases. Often the stroke experience is compared with earlier experience in treating acute myocardial infarction (AMI). The goal of increasing to 20% the rate of treatable acute ischemic stroke patients presenting to hospitals (10% increase from system reorganization and 10% from public/patient education) can be compared to current data from the National Registry for Myocardial Infarction 2 (NRMI-2). In this database, covering the period from July 1995 to June 1996, 122,792 nontransferred AMI patients in the United States were identified; 66% did not achieve acute reperfusion while 33% did achieve some acute reperfusion (27% thrombolysis, 7% alternate interventions) (2). The differences between stroke and AMI are numerous and include disease incidence, variables affecting symptom onset, treatment options available, and treatment time windows. Nonetheless, the similarities of the populations at risk and recent experience with evolving therapy allow meaningful comparisons between AMI and stroke.

The timing of system reorganization and patient and public education programs is itself somewhat controversial. Should these two strategies be separated and implemented serially one at a time? If implemented serially, which of the two strategies should be implemented first? Or perhaps they should be introduced nationally in parallel, allowing local factors and standards to determine the course of implementation.

Scenarios in which the systems are changed via traditional, academically driven professional education prior to public expectation unfortunately depend on widespread acceptance by clinicians of the need to change. Ultimately, such a process is dependent on some overseeing body to determine when the system is ready to implement the second phase. Another problem with this approach, which has been seen in clinical trial recruitment and, to some degree, in the evolution of cardiac treatment, is that teaching new standards of care even with wide acceptance does not ensure that there will be actual changes in health care delivery systems. A sufficient number of patients eligible to receive new treatments must seek care in order to develop and refine new systems.

There are several potential problems with creating public expectation and demand before the treatment standard is fully established. This situation can be driven by the "market." Hurried, haphazard placement of new protocols in conjunction with or just prior to marketing of new services may occur. The nature and/or quality of care provided may vary markedly among medical facilities within the same community. In today's competitive health care environment, cutting edge care can become just another marketing strategy instead of a recognized scientifically driven advancement. In less competitive communities, a national or local public education campaign alone would probably have little noticeable effect on acute stroke treatment. Changing behavior with public education is a slow process.

Ultimately, the most acceptable timing would be the simultaneous introduction of new treatment standards and public education programs to decrease the time from symptom onset to hospital arrival and treatment. Change is often painful, and recognizing the need to change, if left solely to a traditional continuing education model, could be delayed for years. As a result, actual change in patient care delivery would be further delayed. Public education would inject the additional pressure of consumer demand and accelerate the process that each center must undergo to embrace and properly plan new systems for delivery of care. During this difficult process, it is important to remember that the ultimate goal for health care professionals is to safely improve the outcome for every patient cared for in our systems.

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Previous educational programs for stroke have, in general, suffered from a lack of organization and motivation. In the not so remote past, most public education focused on stroke prevention rather than on stroke treatment. Multiple prevention and risk factor awareness resources were available but were often overlooked in the clinical setting in order to use valuable patient contact time to focus on "treatable" diseases. Public education programs stemming from stroke clinical trials and focusing on treatment have reported some success in increasing trial enrollment or decreasing delays in treatment (3). These efforts were local. It is not known whether any benefit was sustained after the stroke trial or program was concluded.

Evaluating the public's knowledge of stroke has been attempted (4-6). Specific results of these efforts will be described in subsequent discussions. It is safe to say that considerable educational efforts will be required to ensure a knowledgeable public, as was the case for AMI. We hope that experiences from cardiac and other organized educational efforts will be useful in helping us create an effective educational campaign for the public and for stroke patients.

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The Stroke Patient's Dilemma

Many stroke-focused researchers and health care providers believe that the process a stroke patient goes through when seeking health care is different from the process used by patients with other diseases. The available studies for review are limited in number and influenced by cultural differences and varying study methodologies. Despite this, important variables in the treatment-seeking behaviors of stroke patients can be identified. One such example is the important role played by witnesses or the first person contacted after the onset of stroke symptoms (7-10). However, a complete picture of the stroke patient's decision-making does not yet exist.

Changing treatment-seeking behavior is one of the most difficult challenges facing patients and professionals responsible for health education campaigns (11). Stroke may be an especially difficult challenge. Compared to AMI for example, stroke presents many more variables that can prolong the delay in seeking medical care (12,13).

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The Message, the Audience, and the Medium

As in Madison Avenue mass marketing campaigns, the design, content, and execution of a public education campaign represents the greatest actual dollar investment. The success of a project depends on identifying "the best messages, the right audience, and the appropriate medium in which to convey the message." An acceptable balance between scientifically based messages about stroke and what the public is capable of understanding needs to be identified. Factors that might motivate change in the population at risk for stroke also need to be identified and evaluated. The benefits of national versus local campaigns or combinations of both need to be further explored. But having answers to these questions is only half the equation. How stroke messages will be coordinated among the various agencies that provide patient and public education and who will support this effort with the necessary dollars for a successful campaign have yet to be decided.

In developing our strategies for patient and public education we might want to consider the sites where patients at risk for stroke receive their health care. Since the majority of potential stroke patients are already receiving medical care (6), one of the stroke education campaign targets could be to directly educate patients at risk who receive medical care at primary provider offices and clinics. The motivational message might emphasize the risk for disability. The symptoms of stroke would be taught to both patient and family and always in conjunction with the desired treatment-seeking behavior.

Once a patient has had a stroke there is a high risk that he or she will have another. A different level of stroke education could be introduced in this situation. Again, direct contact with stroke patients and their families by a health care provider in the hospital, ED, clinic, or primary care provider's office is needed to teach (and re-teach) the symptoms of stroke. Discussion of a particular stroke patient's symptoms will enable the likely witnesses of any second stroke to better recognize neurological change in the individual at risk. Why time is important in seeking health care for stroke should also be discussed. Finally, potential treatment options, risks, and benefits need to be introduced to enable the stroke patient and his or her family to make the best possible decisions should the need arise.

Programs like the one described above are needed today. As more time-dependent treatments for stroke emerge, all health care professionals encountering patients at risk for stroke need to be ready and able to assist patients and families as well as the public at large in making the best possible decisions and facilitating the best possible outcomes. Specific programs focused on treatment-seeking behavior should be used in combination with stroke prevention programs that already exist. Well-designed existing programs need not be discarded or changed, but rather should be incorporated in a master educational campaign so that they can be used more widely. Much cooperation will be needed among interested groups that stand to gain from improved stroke patient outcome. The resulting success of such a coordinated effort will have wide-ranging impact on both the human and financial toll of stroke.

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References

1. The National Institute of Neurological Disorders and Stroke rt-PA Stroke Study Group. Tissue plasminogen activator for acute ischemic stroke. N Engl J Med 1995;333:1581-1587.

2. National Registry of Myocardial Infarction (NRMI). Quarterly Data Report, Ohio Data. San Francisco: Genentech, Inc., September 1996.

3. 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;23:352-356.

4. Awareness and knowledge of stroke prevention: A study of adults, 50 years of age and over. Conducted by the Gallup Organization for the National Stroke Association. Princeton, NJ: 1996.

5. Pancioli M, Broderick J, Kothari R, et al. Public perception of stroke warning signs and potential risk factors. Stroke 1997;28:236.

6. Kotari R, Sauerbeck L, Broderick J, et al. Patients' awareness of stroke warning signs and risk factors. Stroke 1997;28:236.

7. Harper GD, Haigh RA, Potter DM, et al. Factors delaying hospital admission after stroke in Leicestershire. Stroke 1992;23:835-838.

8. Barsan WG, Brott TG, Olinger CP, et al. Identification and entry of the patient with acute cerebral infarction. Ann Emerg Med 1988;17:1192-1195.

9. Kothari R, Sauerbeck L, Jauch E, et al. Stroke victims: Clueless. Acad Emerg Med 1996;3:538-539.

10. Grotta J, and Bratina P. Subjective experiences of 24 patients dramatically recovering from stroke. Stroke 1995;26:1285-1288.

11. Carleton RA, Bazzarre T, Drake J, et al. Report of the expert panel on awareness and behavior change to the board of directors, American Heart Association. Circulation 1996;93:1768-1772.

12. Dracup K, and Moser DK. Treatment-seeking behavior among those with symptoms and signs of acute myocardial infarction. In: LaRosa JH, Horan MJ, Passamani ER, eds. Proceedings of the NHLBI Symposium on Rapid Identification and Treatment of Acute Myocardial Infarction. US Department of Health and Human Services, National Institutes of Health, Bethesda, MD, NIH Publication No. 91-3035, September 1991;25-45.

13. Brown RD Jr, Whismant JP, Sicks JD, et al. Stroke incidence, prevalence, and survival: Secular trends in Rochester, Minnesota, through 1989. Stroke 1996;27:373-380.

14. Alberts MJ, Bertels C, and Dawson DV. An analysis of time of presentation after stroke. JAMA 1990;263:65-68.

15. Kwiatkowski T, Silverman R, Paiano R, et al. Delayed hospital arrival in patients with acute stroke. Acad Emerg Med 1996;3:538.

16. Morris DL, Gorton RA, Hinn AR, et al. Delay in seeking care for stroke – demographic determinants: The delay in accessing stroke healthcare study. Acad Emerg Med 1996;3:539.

17. Barsan WG, Brott TG, Broderick JP, et al. Time of hospital presentation in patients with acute stroke. Arch Intern Med 1993;153:2558-2561.

18. Feldmann E, Gordon N, Brooks JM, et al. Factors associated with early presentation of acute stroke. Stroke 1993;24:1805-1810.

19. Barsan WG, Brott TG, Broderick JP, et al. Urgent therapy for acute stroke: Effects of a stroke trial on untreated patients. Stroke 1994;25:2132-2137.

20. Kay R, Woo J, and Poon WS. Hospital arrival time after onset of stroke. J Neurol Neurosurg Psychiatry 1992;55:973-974.

21. Ferro JM, Melo TP, Oliveira V, et al. An analysis of the admission delay of acute strokes. Cerebrovasc Dis 1994;4:72-75.

22. Fogelholm R, Murros K, Rissanen A, et al. Factors delaying hospital admission after acute stroke. Stroke 1996;27:398-400.

23. Anderson NE, Broad JB, and Bonita R. Delays in hospital admission and investigation in acute stroke. BMJ 1995;311:162.

24. Kolominsky PL, Heuschmann P, Ellul J, et al (for the European Stroke DataBase Collaboration). Delays in admission to hospital for acute stroke: An international comparison. Cerebrovasc Dis 1996;6(suppl 2):132.

25. Lago A, Geffner D, Tembl J, et al. Hospital arrival time after acute stroke: A study in Valencia (Spain). Cerebrovasc Dis 1996;6(suppl 2):132.

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Table 1. Hospital Arrival Times

Study (ref. No.) No. of patients Stroke onset-to-arrival time‡
Alberts (14) 1990, US 457T 42% < 24 hrs
Barsan (17) 1993, US 1,159T 59% < 3 hrs
Feldmann (18) 1993, US 96T 50% < 4 hrs, 4 hrs median, 13.4 hrs mean
Barsan (19) 1994, US 1,116T 77% < 6 hrs
Kwiatkowski (15) 1996, US 42 10 hrs median
Kothari (9) 1996, US 163T N/A
Morris (16) 1996, US 112T 54% < 3 hrs
Kay (20) 1992, Hong Kong 773T 63% < 12 hrs
Harper (7) 1992, Leicestershire, England 374T 25% < 2.5 hrs, 6 hrs median
Ferro (21) 1994, Lisbon, Portugal 309T 42% < 6 hrs, 9.5 hrs median
Anderson (23) 1995, New Zealand 1,008T 50% < 4 hrs, 4.3 hrs median
Fogelholm (22) 1996, Finland 363T 43% < 6 hrs, 10 hrs median
Kolominsky (24) 199, UK/Germany 503T UK: 41% < 6 hrs, 7.1 hrs mean Germany: 56% < 6 hrs, 5.6 hrs mean
Lago (25) 1996, Spain 641T 46.2% < 3 hrs, 3 hrs median

T Combined ICH, SAH, and ischemic strokes or not specified.

Total ischemic strokes only.

Shortest possible time reported for ischemic or, if not specified, combined stroke types.

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Table 2. Variables Affecting Stroke Presentation

(Early = Early Presentation; Late = Delayed Presentation)

Study

(ref. No.)

No. of patients

Patient characteristics

Acute stroke response

Alberts (14) 1990, US

457T

Early: ICH or SAH type

Late: ischemic stroke type

 
Barsan (17) 1993, US

1,159T

  Early: call to 911

Late: call physician

Early: daytime onset

Late: nighttime onset

Early: stroke at work

Late: stroke at home

Feldmann (18) 1993, US

96T

Early: severe or sudden

Early: symptoms recognized

 
Barsan (19) 1994, US

1,116T

  Early: call to 911

Early: daytime onset

Kwiatkowski (15) 1996, US

42

  Late: call physician
Kothari (9) 1996, US

163T

Early: symptom recognition

Late: no symptom recognition

Late: family witness

Early community hospital

Morris (16) 1996, US

112T

   
Kay (20), 1992, Hong Kong

773

Early: ICH or SAH stroke type

Late: ischemic stroke type

 
Harper (7) 1992, Leicestershire, England

374

  Late: living alone

Late: family witness

Late: nighttime onset

Ferro (21) 1994, Lisbon, Portugal

309

Late: no symptom recognition Late: first call to physician

Late: family witness

Early: daytime onset

Fogelholm (22) 1996, Finland

363

Late: ischemic stroke type Late: first call to physician

Late: family witness

Late: nighttime onset

Late: weekend onset

Kolominsky (24) 1996, UK/Germany

503

Early: severe or sudden  
Lago (25) 1996, Spain

641

Early: ICH or SAH stroke type

Late: ischemic stroke type

Early: severe or sudden

 

T Combined ICH, SAH, and ischemic strokes or not specified.

Total ischemic strokes only.

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

Last updated May 17, 2011