In a high-risk, predominantly black medically underserved urban population, significant discrepancies exist between how healthy volunteers say they would behave during a hypothetical stroke compared to how hospitalized stroke patients actually behaved at the time of their stroke. Whereas most healthy volunteers say they would call 911 immediately, most stroke patients delay taking this action. This paradoxical failure to act promptly contributes to delayed presentation, reduced opportunity for acute therapy, and greater stroke morbidity.
A potential explanation for the observed paradox or disconnect between behavioral intent vs. actual behavior is that patients or witnesses may not recognize stroke signs and symptoms when they occur and, therefore, not trigger a call for EMS. While the DASH II study did not find an association between stroke knowledge and EMS use (in fact, those with greater knowledge were less likely to use EMS),10
perhaps lay people have difficulty translating this knowledge to accurately identify a stroke as it is happening. But, in our study, even among those who suspected stroke, only about half used EMS. Therefore, being able to recognize stroke is not sufficient. The action a patient takes in the acute stroke setting may depend on multiple factors including depth of stroke knowledge, presence of social, cultural, or behavioral barriers, and ability to translate knowledge into appropriate action.15
One factor frequently cited by patients as a contributor to delay was the belief that no medical intervention could help them. That observation underscores the importance of educating the public on not only the availability of a time-sensitive therapy but also motivating the public to utilize it. While current stroke education campaigns focus on symptom recognition and calling 911, most do not explicitly state that calling 911 can result in treatment to improve outcome. If people are taught that prompt treatment of stroke is not just limited to standard supportive care, that knowledge could provide motivation that may overcome social and attitudinal barriers found here and reported in other studies.15-17
Additional misperceptions appear to contribute to delay. Despite the exposure of the study community to national stroke education campaigns, two-thirds of the patients did not recognize they were having a stroke. In addition, the community often believed chest pain to be a common stroke symptom, which may have contributed to patients’ failure to recognize stroke.
The most frequently cited factors for delay included patients’ initial belief that their symptoms were not serious and/or did not require treatment. Even among the one-third of patients who recognized they were experiencing a stroke, utilization of 911 was lower than might be expected given the responses of healthy volunteers to questions about a hypothetical stroke. Some patients may decide to call 911 only if they feel their symptoms are severe.11, 15
Future studies should explore community members’ thresholds for calling 911 depending on hypothetical symptom severity and should examine the correlation between patients’ tendency to call 911 and their stroke severity.
Nevertheless, such findings taken in aggregate indicate that current education campaigns are not achieving their goal in this target community; similar findings might be expected in other urban, underserved communities. Therefore, new approaches to public education about stroke symptoms may be necessary. These might include 1) culturally appropriate descriptions of stroke signs and symptoms with a distinction from cardiac signs and symptoms, 2) education campaigns targeted at audiences other than the potential stroke patient, e.g. children,18, 19
3) an emphasis on the fact that a treatment exists that can improve outcomes and minimize disability, and 4) an emphasis on the fact that stroke symptoms, even when not outwardly severe or dramatic, are manifestations of a serious disease process requiring immediate medical attention.
The current findings indicate that surveying community volunteers does not provide reliable data on what barriers exist in that community to seeking acute stroke care. It was difficult to establish in a hypothetical scenario addressed to community volunteers why patients might delay calling 911 in the setting of an acute stroke.
This study has several limitations regarding participant selection. First, the respondents for both the community survey and patient/proxy interview were self-selected, which introduces selection bias, and the number of refusals were not collected thus preventing the calculation of response rates. Second, some characteristics such as medical history other than stroke were not collected for the community volunteers limiting our ability to ensure the two groups are comparable, and there were socioeconomic differences between the survey and patient respondents. Still, the community participants were recruited at organizations in the catchment area of the hospital, chosen specifically because they serve disproportionately black, lower income and/or elderly populations, similar to the population of stroke patients at this particular hospital. To attempt to mitigate for some of these differences, we evaluated the effects of education and adjusted for insurance type when conducting comparisons between groups. Third, it is possible that the recruited patients had less severe strokes than the hospital population, since the majority of interviews in this study were completed by the stroke patients themselves instead of by proxy. Milder stroke severity may have contributed to their decision not to use EMS. However, our finding that there was no greater use of EMS for those patients who could not complete the interview themselves suggests that stroke severity does not fully account for whether or not a patient will arrive by ambulance. This is an important topic for future investigation.