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NINDS: Stroke Proceedings: Barch

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

Seeking Health Care Following Stroke: Public Education

Carol A. Barch, M.N., C.R.N.P., C.N.R.N. 
University of Pittsburgh Medical Center

Advances in the diagnosis, management, and acute treatment of stroke present us with the challenge of delivering care to a population that traditionally seeks care hours and even days after the event in a system that does not respond urgently to this disease process. In the past, early treatment interventions for stroke were not available and there was no incentive to seek immediate health care. However, recent evidence indicates that early intervention for stroke increases the chance for recovery and restoration of function (1). Therefore, it is imperative that persons experiencing signs and symptoms of stroke seek health care immediately to reduce disability and death.

The immediate goal for acute stroke care is to decrease the time it takes from stroke onset to initiation of acute medical intervention. This entire time is described as "delay time." Delay time from first symptoms and signs to the start of treatment has been studied in the cardiac population to determine changes needed to streamline care. These studies are helpful when trying to understand delay time in the stroke population. Knowledge of the factors influencing delay time and the decision-making process of stroke victims and bystanders will help create an effective public education campaign, which is the focus of this chapter.

Delay Time

Delay time--the time between the onset of symptoms and the start of medical intervention--has been well-studied in an effort to understand health-seeking behaviors. The literature on cardiac health-seeking behavior documents the various phases and characteristics of delay time. The six phases adapted by Alonzo (2) from Suchman's stages of illness (3) are outlined below:

  • Prodromal period. The period between the initial awareness of a health deviation (prodromal symptoms) and the onset of acute symptoms.
  • Definition period. The period of self-evaluation that occurs between the onset of acute symptoms and the seeking of lay advice.
  • Lay consultation period. The period between the seeking of lay advice and medical consultation. If medical consultation is not sought, the period extends to the initiation of travel to the hospital.
  • Medical consultation period. The interval between the start of medical consultation and the initiation of travel to the hospital.
  • Travel period. The time spent traveling to the hospital.
  • Hospital procedural period. The time spent in the hospital emergency department (ED) or in the admission office until definitive treatment begins. This phase includes patient admission procedures, initial medical evaluation, and diagnostic studies.

The sequence and amount of time spent in each phase described will vary with each individual. To reduce delay time, each period must be understood and specific problems addressed. Once the individual or the bystander has made medical contact, the acute stroke system is considered to be activated. It is then up to the system to decrease the time it takes to start the appropriate medical intervention. Therefore, understanding decision-making in the first three time periods is critical to developing an effective public education program.


Decision-Making/Delay Time

Typically, in the prodromal period the individual recognizes something is wrong. In the stroke population it is unclear what percent of patients are aware of their symptoms or that their health is impaired. Those with altered cognition following a stroke are at special risk of not recognizing symptoms.

The definition period that leads to attempts to seek help is a multidimensional process. The individual will recognize something is wrong. At that point he or she decides what may be wrong, how serious it is, and what to do about it. Determination of the problem will influence the perceived level of seriousness and the necessity of action. The action may include initiating self-treatment, seeking help from a family member or friend, or contacting a health care professional (family physician, clinic, or 911).

Moss et al (4) studied delay time in the cardiac population and concluded that three cognitive factors are required to make a decision to seek medical help: (a) perception of presenting symptoms, (b) appreciation of the meaning and seriousness of the symptoms (recognition), and (c) realization that medical help is indicated for the recognized and appropriately interpreted symptoms. Education programs should focus on these three factors to facilitate specific decision-making behaviors for the stroke population.

The lay consultation period may be even more important in decreasing delay time in the stroke population. If a friend or family member is consulted, the burden of making a decision is shifted to that individual. The lay person must determine if the problem is serious and what should be done. Therefore, understanding stroke and stroke symptoms, as well as the appropriate actions in response to stroke, becomes imperative in the lay population. Anecdotal information indicates that nearly all stroke patients have help from another person when obtaining health care. Therefore, family members or close friends of those at risk for stroke must be a target in a public education campaign.


Health Belief Model

The Health Belief Model (HBM) is used as the theoretical underpinning for understanding health-seeking behaviors. The HBM evolved from the premise that each individual's perception of the world determines what that individual will do. The concepts of the model include the individual's perceptions of susceptibility to the disease, severity of the disease, and benefits and barriers associated with the choice of action that may prevent the disease process ( Figure 1 ). The theory was developed to explain preventive health behaviors.

The second stage of the model is "illness behavior," described by Kasal and Kobb (5) and by Kirscht (6) as a person's actions when faced with acute symptoms. Illness behaviors include recognizing symptoms and deciding whether to self-treat or seek medical care. The HBM theory represents a universal view of health behaviors. The HBM also relates psychological theories of decision-making, which attempt to explain actions in a situation presenting choices, to an individual's decision about alternative health behaviors (7). The HBM provides a framework for determining the predictive variables that influence health care choices of stroke survivors or their family members when they are faced with the signs and symptoms of acute stroke.


Delays in Seeking Health Care for Heart Disease

The problem of delaying health care is not unique to the stroke population. In the late 1960s when a high mortality associated with heart attack was identified, the delay time in seeking medical treatment was recognized as a critical factor (8). It was evident that if patients sought treatment sooner, lives could be saved by the advanced treatment options available. Over the last 20 years, the literature on delay in seeking health care has been exclusively in the domain of the cardiac population.

Assessments of the characteristics of individuals with heart disease who seek health care have been reported. The studies found no significant difference in hospital arrival time with respect to age, gender, educational level, socioeconomic class, or past history of heart disease (2,4,8-13). A documented medical history of hypertension, diabetes, or angina (4,8,9,12,13), self-treatment of symptoms (2,9,12), and the presence of family members who participated in seeking health care (4,8) all contributed to increased delay time. Chest pain did not shorten delay time unless the patient was unstable (12). These characteristics specific to the cardiac population have been examined to uncover any similarities or trends in the stroke population.


Delay Pattern of Stroke Patients

Despite the severity and prevalence of the disease, little is known about how individuals decide to seek medical help when signs and symptoms of stroke appear. We do know that there are barriers that explain the long delay in seeking care in the stroke population.

The first barrier is the inability to recognize the symptoms of stroke. Often the symptoms are not identified as stroke but as another less serious problem. Stroke victims or bystanders may decide to take care of the problem on their own and delay seeking medical care. In a phone survey conducted by the Dupont Company in 1989, the majority of individuals interviewed did not understand what a stroke was or how to recognize the signs and symptoms (14). In 1996, a Gallup poll conducted by the National Stroke Association revealed that the level of knowledge of stroke symptoms and risk factors has improved since the 1989 poll. However, the improvement was minimal. Face, arm, and leg weakness on one side of the body was the most frequently (58%) reported known symptom of stroke (15). Stroke recognition remains a significant problem when 42% of the population cannot name the most common and recognizable symptom of stroke.

A stroke can impair cognition and judgment and limit mobility, speech, or vision, preventing one's ability to seek help. Stroke may occur during sleep, in which case the onset time cannot be determined and acute intervention cannot be safely implemented.

A number of studies (16-22) have been published on delay time in the stroke population. These studies varied in methodology and had small sample sizes. Moreover, those studies completed in Europe are difficult to apply to the U.S. population because of differences in the health care delivery system. The Duke/Veterans Administration stroke registry (21) revealed that only 42% of a total of 457 stroke patients presented within 24 hours and 33% presented within 24 to 48 hours following the onset of symptoms. The delay time was greatly reduced after initiating changes in the health care delivery system and increasing awareness among both the public and health care providers. Presently, we do not have sufficient data on the delay time for stroke patients. These data are necessary to measure the impact of education and changes in the health care system on delay time for stroke treatment.

A complete understanding of the causes of delay time for stroke treatment will require studies with a large number of patients. Variables that may need to be examined are:

  1. Actual presenting symptoms of stroke.
  2. Patient and bystander perception of the severity of different symptoms.
  3. Circumstances at the time of stroke (onset during sleep, bystander present, location at home or elsewhere).
  4. Patient and bystander recognition that symptoms are due to stroke, that they represent a serious problem, and that there is a potential treatment of known benefit.

These variables need to be explored further to develop a better model of health-seeking behaviors in acute stroke patients ( Figure 2 ).


Education Campaigns

Because of the devastating results of delaying immediate medical attention, many experts encourage the development of community educational programs to expedite arrival time at the hospital following stroke or heart attack (4,8-11,13,18,20-26). A study by Podell (27) showed that despite educational efforts the number of cardiac patients who did not seek medical attention within 4 hours of the start of symptoms of heart attack in 1976-77 had not changed in comparison to a 1965-66 group.

A community heart disease awareness program was developed, implemented, and measured by Ho et al (28). The entire educational campaign cost $300,000. Cardiac patients who came to the ED with complaints of pain were examined. This specific group of patients was tested prior to and following the education campaign. Results indicated that delays in arriving at the hospital following onset of symptoms did not change, but the level of education increased. Ho et al concluded that education increased the level of knowledge but did not change patient behavior. Years of educational efforts and community awareness programs supported by the American Heart Association did not significantly reduce the delay time of individuals with heart disease seeking medical attention (27). For public education campaigns the most difficult problem is finding ways to effectively change behavior to decrease delay time.


The Proposed Education Process

The proposed education process presented in Figure 3 is based upon what is known about the stroke population, work previously done with the cardiac population, and the HBM. There are two tiers to the process. The first tier seeks to educate the general public; the goals are to increase awareness of stroke, improve the recognition of stroke symptoms, and reinforce the concept that a stroke is an emergency. This effort should be conducted by all those working in the area of stroke, including professional, governmental, and commercial organizations. The second tier of education would focus on those at risk for stroke and their families. These individuals must understand their susceptibility to stroke, their ability to take preventive measures, their need to recognize the symptoms of stroke, and their need to seek immediate medical attention if they have a stroke. Primary care physicians, specialty physicians, and other health care providers need to provide information to stroke-prone individuals in a one-on-one setting.

Whether this process changes behavior is not known. Data should be collected on patients presenting within 6 hours to determine if public education efforts are beneficial. Based on what is already known, the initial reduction in delay time may be the result of health care system changes and increased awareness of the importance of rapid identification and treatment of stroke within the medical community rather than changes in the behavior of stroke patients and bystanders due to public education campaigns.



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Figure 1 . The Health Belief Model.


Figure 2 . Health-seeking behaviors in stroke patients: decision-making dilemma.



Figure 3 . Public education model: decreasing delay time in the stroke population.


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

Last updated December 19, 2013