Sex-Based Differences in Symptom Perception and Care-Seeking Behavior in Acute Stroke



 

Patricia A Zrelak, PhD, RN, NEA-BC, SCRN, CNRN

Perm J 2018;22:18-042 [Full Citation]

https://doi.org/10.7812/TPP/18-042
E-pub: 09/20/2018

ABSTRACT

Context: Lack of early stroke recognition and delays in seeking emergency care by persons experiencing a stroke severely limit acute treatment options. Sparse and sometimes conflicting evidence suggests sex differences in care-seeking behaviors in stroke, stroke knowledge, perceptions of stroke symptoms, and the importance of physical location at the time of stroke and of having a witnessed stroke.
Objective: To explore specific sex-based differences in stroke presentation and associated care-seeking behaviors.
Design: Descriptive study based on a convenience sample of 60 patients with stroke admitted to an academic medical center in Northern California.
Main Outcome Measures: Impact of the patient’s sex on 1) time to presentation (early [≤ 4.5 hours] vs late [> 4.5 hours]); 2) perception of symptoms and clinical signs; 3) stroke knowledge and decision making; 4) physical location at the time of stroke; and 5) bystander presence and assistance with decision making.
Results: There was a discrepancy between how patients perceive symptoms and their medical findings on physical examination. Although most patients had at least one sign or symptom associated with nationally used stroke recognition acronyms, both sexes delayed care because they did not perceive their symptoms as urgent. Early-presenting men were more likely to have a higher stroke severity score at admission, receive alteplase, arrive by Emergency Medical Services, and have a witnessed stroke. Both early- and late-presenting women reported more nonfocal symptoms than did men.
Conclusion: This study suggests that there are sex-based differences in symptom perception and care-seeking behavior in acute ischemic stroke.

Introduction

Acute ischemic stroke continues to be a leading cause of mortality and adult disability in the US, despite improvements in acute stroke treatment.1 Although both sexes are negatively affected by stroke, women experience 55,000 more strokes annually compared with men and account for 58% of all stroke-related deaths. By age 85 years, 1 in 5 women will experience a stroke compared with 1 in 6 men.2 Women are also more likely to be older at the time of their stroke, to have a more severe stroke and worse outcomes, have longer door-to-treatment times, and in some but not all studies, are less likely to receive acute stroke treatment.1,3-8 

Acute stroke treatments are limited to intravenous (IV) alteplase and endovascular therapy. Both are time dependent, with earlier treatment times associated with better clinical outcomes. Despite the approval of alteplase more than 22 years ago and the continuing increase in certified stroke centers, it is estimated that less than 5% to 10% of all patients with ischemic stroke in the US receive this potentially life-altering medication.9-11 Endovascular therapy performed within 0 to 6 hours of stroke onset became the standard of care in 2015 for a further subset of patients who have moderate to large strokes and timely access to a medical facility with endovascular capabilities.12 With the recent publication of results from the DWI (diffusion-weighted imaging) or CTP (computed tomography perfusion) Assessment with Clinical Mismatch in the Triage of Wake-Up and Late Presenting Strokes Undergoing Neurointervention with Trevo (DAWN) and Endovascular Therapy Following Imaging Evaluation for Ischemic Stroke 3 (DEFUSE 3) trials, it is reasonable to treat select patients with endovascular treatment up to 24 hours after stroke onset.13,14 Although endovascular treatment rates are increasing, overall rates remain extremely low.15 

An established factor associated with the underutilization of acute stroke treatment is the lack of stroke symptom recognition and delays in seeking emergency care by persons with acute stroke.6,16-22 In some but not all studies,23 women with stroke have been shown to have longer delays in seeking treatment compared with men. Some experts believe that these delays are based on sex differences in the perception and internalization of symptoms.6,20 A small number of studies have reported differences between sexes in reported stroke symptoms, although findings are conflicting.24 Several studies have reported that men are more likely to experience dizziness and/or loss of balance compared with women,25-27 whereas other studies report that women are more likely to experience confusion and/or aphasia.28-30 Data on sex-based differences in stroke knowledge are also inconsistent, with several studies favoring women,31,32 whereas others report no substantial sex-related differences.33,34 There is a growing body of research signifying the importance of receiving timely care of a stroke bystander and of the physical location of the patient at the time of the stroke. However, this research remains sparse and is primarily based on hypothetical situations.16,35,36

A better understanding of how the perception of symptoms influence treatment-seeking behavior and time to presentation to the Emergency Department (ED) for stroke may improve our understanding of which symptoms are most predictive of time to treatment and for targeting community and patient education.37 Studies completed to date do not differentiate between sexual identity and sex identification assigned at birth.

The objective of the current research was to conduct a pilot study of patients with an acute stroke diagnosis admitted to the ED of a busy academic medical center to examine the relationships among subjective measures (symptoms and patient perception), patient and bystander knowledge of potential treatment, and clinically objective measures of stroke between women and men and the impact of time and physical location at the time of the stroke to ED presentation. Specific study aims were to determine the impact of sex on the following:

  1. early (≤ 4.5 hours from stroke symptom onset) and late (> 4.5 hours after symptom onset) presentation to the ED
  2. the perception of symptoms and clinical signs
  3. stroke knowledge and decision making
  4. bystander presence and engagement in the decision-making process
  5. location at the time of stroke onset and decision making.

Methods

Study Setting and Design

This descriptive prospective study took place at a 612-bed academic medical center located in Sacramento, CA. The hospital had Comprehensive Stroke Center capabilities and was certified as an Advanced Primary Stroke Center by The Joint Commission. The study received approval by the hospital’s institutional review board and was conducted in accordance with applicable national and local health authorities and institutional review board requirements.

This study was based on a convenience sample of 60 patients admitted between late 2014 and early 2016. All patients were at least 18 years of age and were admitted to the hospital with a suspected or confirmed diagnosis of acute ischemic stroke. Other inclusion criteria included the ability to provide written consent and the ability to answer study questions. Non-English-speaking patients were excluded because there were no resources to translate the consent forms and other study documents. Pregnant patients were excluded because treatment options differ and because the presentation of stroke is rare in this population.

Assessment

Demographics, medical history, and results of the presenting neurologic assessment were obtained from the electronic medical record. In addition, patients confirmed their sex. The neurologic assessment and National Institutes of Health Stroke Scale (NIHSS) score at admission were obtained from the academic neurology team’s template-based admitting history and physical examination. In the rare case when the NIHSS score was not recorded, a study registered nurse who was certified in the NIHSS determined the score from the results of the neurologic examination portion of the admitting history and physical examination.38 

Patients were asked to answer during their hospitalization open-ended questions regarding why they came to the ED, what they thought was wrong, and their decision-making process. They also were asked closed-ended questions regarding the following:

  • their stroke knowledge (on a 5-point Likert scale from 1, indicating not likely, to 5, for very likely) and how likely they thought it was they were having a stroke (using the same 5-point Likert scale)
  • whether bystanders were present, and if so, their relationship and sex
  • whether Emergency Medical Services (EMS) were called, and if so, who made the decision, and if the decision maker was not the patient, the person’s relationship and sex
  • whether the patient knew there was a treatment that could possibly reverse a stroke, and if so, did s/he know there was a time limitation for administration of the treatment.

Further questions included patients’ prestroke modified Rankin Scale rating and ambulatory status before admission. In addition, patients rated the presence and severity of 28 nonfocal and focal stroke symptoms on a scale from 0 (absent) to 5 (worst possible). All questions were verbally asked, and responses were recorded by study personnel.

Statistical Analysis

Descriptive statistics (c2 for categorical data and t-test for continuous data) were used to describe bivariate differences between groups. A sample size of 30 patients per group provided a power of 0.70 to detect a 32% difference in knowledge and symptom occurrence (a = 0.05; odds ratio = 0.26 or risk ratio = 0.47). A sample size of 15 per group provided 60% power to detect a 40% difference (a = 0.05). Unfortunately, many comparisons had much smaller numbers per cell.

Responses to the symptom questionnaire were compared with signs and symptoms noted by the physician in the admitting history and physical examination. Four levels of agreements were recorded (patient and physician reported, patient only, physician only, neither patient nor physician reported). The positive predictive values were then calculated using the physician-reported finding as the gold standard. Because of the large numbers of zero cells and small sample size, confidence intervals and sensitivities were not included.

Results

A total of 60 patients were enrolled; however, 1 patient was deemed not to have a stroke and was deleted from further analyses. All patients were cisgender and admitted from the ED. Of the 59 remaining patients, 17 (28.8%) presented in less than 4 hours from symptom onset (early presenters; Table 1). The early presenters had higher presenting NIHSS scores (mean of 6.0 vs 4.1, not significant), indicating greater stroke severity, and were slightly but nonsignificantly older than the late presenters (Table 1). Both groups had similar prestroke modified Rankin Scale scores, and almost all were independently ambulatory before admission (Table 1). In the 42 patients who presented more than 4.5 hours after symptom onset (late presenters), 16 (38.1%) had wake-up strokes, in which stroke symptoms were newly present on wakening (27.1% of the total sample; Table 1).

Sex Differences and Presentation Times

There was an approximately equal number of men and women in the late- and early-presenting groups (Table 2). Early-arriving men had a higher presenting NIHSS score (7.7 vs 4.8) and were more likely to receive alteplase compared with early-presenting women (71.1% vs 20.0%; Table 2). Underlying disease patterns were similar between men and women, except that a higher percentage of women had previous stroke compared with men (22.6% vs 3.65%), and men were more likely to have a history of drug or alcohol abuse (25.5% vs 9.6%; Table 3).

Symptom Presentation

Both early- and late-presenting women were more likely to report nonspecific stroke symptoms (Tables 4A and 4B). Late-presenting women reported more chest pain; difficulty or more labored breathing; problems with concentration or memory; nausea or vomiting; and feeling anxious, irritable, or uneasy compared with late-presenting men (Table 4B). Early-presenting women were more likely to report problems with concentration or memory and problems with lightheadedness or feeling faint compared with early-presenting men (Table 4B). Early-presenting men were more likely to report traditional stroke symptoms, such as increased numbness or weakness of the face, arm, or leg; difficulties with speech; and/or swallowing difficulty. Other differences can be seen in Table 4A, 4B and 4C. Overall, the positive predictive value of patient-reported symptoms was low, even for focal deficits, in part because of the small sample size.

Stroke Knowledge

Women with prior strokes were slow to seek care, with most being late presenters. Overall, most patients were uncertain or thought it unlikely that they were having a stroke, even if they had a prior stroke. Besides the answer to the question of “how likely they thought it was that they were having a stroke” (which was only slightly higher in the early-presenting group), this theme is evident in the narrative responses (Table 5). Interestingly, in those with a nonwakeup stroke, there was an extended period between the initial awareness of their stroke symptoms and the seeking of lay advice and/or medical consultation. Early-presenting women had the highest self-reported knowledge of treatment of stroke (40%), however all groups did not know that it was important to get to the hospital quickly (range = 9.1% to 15%).

Stroke Symptom Acronyms

Most patients, regardless if they presented early or late, reported at least 1 symptom that met the most commonly used mnemonic acronyms used for educating the public about stroke signs and symptoms. These mnemonics included FAST (face, arm, speech, and time), SAVES (smile, arms, vision, even balance, speech), SAFE (speech, arms, face, and eyes), and the American Heart Association Sudden List (sudden numbness or weakness of the arm, face, or leg, especially on just 1 side of the body; confusion; trouble speaking or understanding speech; trouble seeing in 1 eye or both; trouble walking, loss of balance, lack of coordination or dizziness; and severe headache without a known cause). Percentages of patients with at least 1 FAST symptom ranged from 60% for early-presenting women to 95% for late-presenting women. Because there was very little variation between the different scales, only the FAST results are included (Table 2). Physicians noted at least 1 FAST finding in all patients (Table 2). The major discrepancy between patients and physicians relates to how patients perceive “weakness.” Instead of reporting weakness or sensory loss, patients were more likely to equate the symptom to a task they could not perform, such as button their shirt or open a door. Patients were more likely to describe leg weakness as “loss of balance,” a problem with falling, dizziness, feeling faint, or difficulty walking. Often the symptoms were described as vague or ambiguous, and with uncertain interpretation.

Importance of Place and Bystanders

Early-presenting men were more likely to report that their onset of symptoms occurred at work or in a public place (85.7%) compared with early-presenting women, most of whom (70%) reported symptom onset starting at home. Even when symptoms started outside the home, women were more likely to return home and confer with others before making the decision to seek help. Early- and late-presenting men reported being more involved in the decision-making process to seek emergency care. Early-presenting men more frequently arrived by ambulance (71.4%) and more frequently received alteplase or endovascular treatment of their stroke (85.7%) compared with women (50% and 40%, respectively; Table 2).

18 042

18 042table b

Discussion

This study suggests that women with acute stroke report nonfocal symptoms (eg, generalized weakness, chest pain, shortness of breath, problems with concentration, problems with memory, feeling anxious, and word-finding difficulty) more frequently than do men. These findings are more apparent in late presenters compared with those who present to the hospital or ED within 4.5 hours. Regardless of sex, patients with stroke appear to perceive and explain their symptoms differently from how they are described by health care practitioners. Patients were more likely to describe tasks they could not perform and overall feelings compared with focal signs noted by health professionals. These findings have an impact on the functionality from the perspective of mnemonic acronyms such as FAST, which emphasize loss of function in terms of face, arm, or leg weakness. Although their symptoms were potentially life altering, patients did not tend to dwell on the onset of symptoms and underestimated their severity. There was a gap between the perception of symptoms and the appreciation of the meaning and seriousness of the symptoms and then to decision or actions in seeking help. Despite having at least 1 focal deficit, both late and early presenters were uncertain that they were having a stroke, with most patients being unsure of the cause of their symptoms. These findings correlate with previous reports acknowledging that most individuals do not attribute stroke symptoms to a stroke. This may be in part because of the vagueness of the symptoms and the self-interpretation of their meaning, including the lack of attributing symptoms to a major problem. Some patients lacked the somatic awareness of a change in their physiologic status. Exploring alternative stroke symptom messaging may help patients and other individuals better recognize stroke.

Including the location and cause of the stroke may help to further explain differences in presentation. For example, elderly women are more likely to have atrial fibrillation, although not found in this study, placing them at higher risk of a cardioembolic stroke. Cardioembolic strokes are more likely to occur in larger cerebral vessels causing higher severity strokes that may include cortical findings, such as language loss and anosognosia (a failure to recognize the symptoms of one’s own illness), as reported in previous studies.

Bystander and lay consultation appear to be important in decision making and timely presentation to the ED. For women, the burden of decision making was more often shifted to a nonspousal family member, such as a son or daughter, or friend who helped to determine the seriousness of the event and the action that should be taken. This may be because elderly women are more likely to live on their own compared with elderly men. Interestingly, when women first experienced stroke symptoms outside the home, they returned home before reporting symptoms to others. Men were less likely to shift and/or report the shifting of decision making to others, reporting taking an active role in the decision to seek emergent care; however, the EMS or 911 telephone calls were most often made by a bystander, most commonly the patient’s spouse when the stroke occurred at home. Most of the recurrent strokes in this study occurred in women. Even with recurrent stroke, women were slow to seek care, most often relying on others for decision making. This emphasizes the importance of educating family members, caretakers, close friends, and others close to those at risk of stroke about the signs and symptoms of stroke as well as the need to obtain emergency care.

Our study had a number of limitations. This was a small convenience sample from a single hospital. Most strokes were minor to moderate in severity, because patients had to have the ability to consent and comply with study questioning. Responses by patients with more debilitating strokes may differ from those in this study. Stroke cause and location may confound the differences between sexes and was not accounted for. The small sample size limited the analyses that could be performed, and most findings were insignificant owing to low power.

Conclusion

Lack of timely recognition of stroke symptoms by persons with stroke continues to be a problem in acute stroke care. Although women are more likely to report nonfocal stroke symptoms, both men and women often do not recognize or correctly attribute signs and symptoms of stroke as such and thus delay seeking emergency care. Bystander roles and the patient’s location at the time of the stroke, as well as social roles and relationships, influence care-seeking behaviors in both sexes, with women being more likely to defer treatment decisions until conferring with others. This pilot study supports conducting a larger study to confirm these findings, to better understand how patients perceive stroke symptoms, and to further understand how they evaluate and to respond to changes in their health status. This type of research may help improve the community health messages on stroke symptoms, stroke recognition, and the need to obtain emergency care.

Disclosure Statement

The author(s) have no conflicts of interest to disclose.

Acknowledgments

This study was funded in part by a grant from the Genentech Corporation, South San Francisco, CA.

Kathleen Louden, ELS, of Louden Health Communications provided editorial assistance.

How to Cite this Article

Zrelak PA. Sex-based differences in symptom perception and care-seeking behavior in acute stroke. Perm J 2018;22:18-042. DOI: https://doi.org/10.7812/TPP/18-042

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