Stroke-Risk Perception in Women: Getting the Message Out

“When you are thirsty, it is too late to dig the well”

– Chinese proverb

Mrs Jones is like so many others we see on the stroke service every day. As a 64-year-old African–American female, with a history of hypertension, diabetes and poorly controlled cholesterol, she is a common face of stroke in the USA. She was working in Wal-Mart this January when her coworker noticed that her faced looked a little droopy. She ignored it, as she had no pain, until the right side of her body was so weak that she couldn't stand up. She arrived at the emergency department more than 6 h after her symptoms started, long after the 3-h window for acute treatment with tissue plasminogen activator (rTPA) therapy had passed. When I met her, she was hemiplegic, aphasic and apraxic. Over the next several weeks she developed an ability to name simple objects and repeat simple phrases, but her right side remained paralyzed. She will probably require full-time nursing support with activities of daily living for the remainder of her life.

One frustrating aspect of stroke neurology is that once the time window for acute intervention has passed, patients can only be monitored and medical management optimized as we wait and hope for recovery. Some patients do recover remarkably well, but others remain significantly disabled or unable to resume their former functional status. This is especially true for women, who are much less likely to return to independent living compared with age-matched men.

Much of the focus and funding in stroke is for the acute treatment of stroke, since this is considered to be cutting edge, but few patients present in time for these treatments. We often lose sight of the fact as stated by Ben Franklin that, “an ounce of prevention is worth a pound of cure”. Although less glamorous than neurointerventional therapies and acute neuroprotection trials, promoting lifestyles that reduce stroke risk factors at a population level is both cost effective and efficacious.

Stroke is the third leading cause of death after heart disease and cancer and the leading cause of disability worldwide. The burden of stroke often falls on women. The majority of stroke deaths now occur in women, and of the 5.7 million US stroke survivors, 3.3 million are women and only 2.4 million are men. Importantly, stroke, along with heart disease, is largely preventable through the control of risk factors, such as hypertension, diabetes, smoking and atrial fibrillation. Recently, much attention has been paid to sex differences in stroke biology, epidemiology and clinical presentation and outcome. A recent feature issue in the journal Stroke [101], focused on this topic to alert readers to the American Heart Association's public health campaign: ‘Go Red for Women’, with the goal of educating women about their risk of heart disease and stroke. Despite these aggressive education campaigns, women do not perceive stroke to be a major health problem and do not see themselves to be at risk.

“Only 8% of women identified stroke or heart disease as a major concern, despite the statistics that one in two American women will die of heart disease or stroke.”

In fact, in a nationwide telephone survey women identified breast cancer as their top health concern. A total of 61% of women identified cancer as the leading cause of death, and most women identified breast cancer to be the greatest health risk they faced [1]. Only 8% of women identified stroke or heart disease as a major concern, despite the statistics that one in two American women will die of heart disease or stroke. This data is presented not to minimize the impact that breast cancer has on women's personal health and self-image, but to highlight the fact that public health campaigns have been dramatically successful in increasing women's perception of risk for breast cancer. Vehicles, such as ‘Race for the Cure’ [102] and the pink ribbon campaign, have resonated with the public. It is hoped that the ‘Go Red for Women’ campaign will do the same for stroke and heart disease.

“It is clear from numerous studies that women do not perceive heart disease or stroke to be a major concern…”

It is clear from numerous studies that women do not perceive heart disease or stroke to be a major concern and that they are not well informed about their risk [1,2]. In an American Heart Association and American Stroke Association telephone survey of 1024 women, only 26% of women older than 65 years reported being well informed about stroke [3]. We recently reported results from a survey analysis of women at high risk for stroke. Women had a surprising lack of knowledge for risk factors and warning signs, even when they themselves had the risk factor. For example, women with atrial fibrillation, which increases stroke risk fivefold or more, were unaware that they were at risk for a stroke. This group of high-risk women perceived their risk to be the same as their peers [4]. These data suggest that those most in need of primary prevention efforts are not getting the message.

A Healthy People 2010 goal is to increase knowledge on stroke warning signs and risk factors. Recognition of warning signs is crucial so that patients call 911 and arrive at the emergency room within the timeframe required for rTPA to be given. Knowledge that a therapy is available and that stroke can have serious outcomes is a prerequisite for an increased personal risk perception. However, knowledge regarding the warning signs and risk factors for stroke remains poor and is often lowest in those highest at risk [2,5–6]. Older age, a lower level of education, being hypertensive and smoking were associated with a lesser knowledge of stroke [5,6]. It has been demonstrated that the symptoms or warning signs of stroke are also confusing, since they often vary widely and are nonspecific [5–7]. Often individuals have more difficulty identifying stroke symptoms or warning signs than risk factors [8], which directly affects acute management by influencing emergency department arrival times.

Strategies to encourage behavioral change are a key component primary and secondary prevention of stroke. Certain risk factors, such as hypertension, diabetes, atherosclerosis, smoking and obesity are modifiable. How to motivate people to modify their lifestyle in order to reduce risk remains a challenge of public health programs. If women do not perceive themselves as being at risk for stroke, they are unlikely to aggressively manage their risk factors. Risk recognition has changed health-seeking behaviors in other diseases. For example, cancer risk perception predicts screening behaviors and risk reduction practices. This has led to the development of very successful strategies such as mobile mammography units that bring screenings directly to high-risk communities [9].

So how do we address these issues? An important first step is educating women, especially those at high risk. Risk perception is a snapshot of a community's knowledge and health beliefs, which helps to target education initiatives for primary prevention measures. Risk perception is also an important individual parameter, which can be used to begin individualized discussions between a physician and a patient. It is the job of physicians to communicate these risks to patients.

“Strategies to encourage behavioral change are a key component of stroke primary and secondary prevention.”

Perception of risk is becoming an increasingly important issue, as our population will be the first to have a lower life expectancy than the generation before it. Stroke rates are increasing in women who were traditionally thought to be at low risk, women aged 45–54 years [10]. This rise has been attributed to an increase in risk factors related to the metabolic syndrome, such as increased abdominal girth and diabetes. Although the prevalence of the metabolic syndrome is similar in men and women, stroke risk and subclinical atherosclerosis rates are greater in women [11]. In addition, the metabolic syndrome impairs the fibrinolytic system and reduces the rates of acute clot thrombolysis (leading to lower rates of recanalization and restoration of blood flow to the ischemic brain) especially in women [12]. Since rTPA is the only effective treatment for an acute stroke, these women are now at both increased risk and are more likely to have poorer outcomes when a stroke occurs [11–13]. This is a group that should be targeted for primary prevention and stroke education by healthcare providers.

Increased funding and creative strategies for large-scale public health campaigns are only part of the solution for primary prevention. Primary prevention often begins in the doctor's office, and brief encounters can be some of the most powerful factors in influencing change. Primary care providers are responsible for most of a patient's education, especially with common conditions such as diabetes and hypertension. However, specialists are often the physicians who are treating patients at high risk for stroke. For example, in our hospital's cardiology practice, we found that only 5.4% of women with atrial fibrillation (n = 2 of 37) identified this as a risk factor for stroke [4]. The data from these women suggest that it would be worthwhile including a team of providers in interventions to minimize risk. Solutions to increase knowledge of risk in women are being developed. These include waiting room worksheets for patients to complete, highlighting risk factors for stroke. Hopefully these will educate patients and create a discussion centered on prevention of stroke in the busy office setting.

“It is not until patients understand and acknowledge that they are at risk that changes will be made.”

Addressing our system of delivering and paying for healthcare is also necessary in order to optimize prevention programs. As long as private insurance and Medicare or Medicaid do not reimburse for preventative care visits, or compensate for time spent with education or counseling patients, healthcare providers will not be able to provide the high-quality care that patients deserve. Health insurers can be instrumental in the move towards the prevention of stroke, through the monitoring of medication adherence or the encouragement of smoking cessation or assistance in weightloss programs. A system that values and encourages regular healthcare follow-up will see a population less disabled by stroke and heart disease. As our population ages, the burden and cost of stroke care will continue to increase. As women live longer than men, they have more overall events, poorer recovery and increased disability when a stroke does occur. We must advocate aggressive primary prevention and this can only be done in a population primed with knowledge about stroke risk.

We offer the following suggestions to increase risk perception of stroke in women:

Encourage stroke awareness and advocacy events at a community level that target women. This will often require guidance and funding at a national level from organizations such as the American Stroke Association. For example, encourage communities and local organizations to run community walks, establish charity events, such as bridal gown sales or beauty services donating a portion of proceeds to the American Stroke Association. We should encourage stroke survivors and their families to tell their stories at community events, since putting a face to the disease (with its associated disability) is something that patients remember.

Continue large-scale public health campaigns, such as the American Heart Association's ‘Go Red for Women’, utilizing media outlets.

Reach out to professional groups that work with at-risk women to incorporate them into the stroke prevention discussion. The American Academy of Family Physicians, The American College of Cardiology and The American College of Obstetrics and Gynecology, as well as professional nursing organizations, can all deliver tailored health information to women. Provide healthcare workers with easy to use tools in their office, such as patient stroke-risk worksheets, which can be filled out in the waiting rooms.

At the policy level, work with insurers to provide incentives for patients to quit smoking or lose weight. Encourage tracking of prescription filling practices to identify patients that may not be taking statins or other necessary preventative medicines. Insurers as a third party can be another check to remind patients of why they should adhere to health recommendations.

It is not until patients understand and acknowledge that they are at risk that changes will be made. The onus is on us as physicians to educate, as well as on patients to comply with our recommendations; otherwise we will continue to look for that ounce of cure that will only work for the lucky few.