NINDS: Stroke Proceedings: Lynden Keynote

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

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Keynote Address: Magnitude of the Problem of Stroke and the Significance of Acute Intervention

Patrick D. Lyden, M.D.
University of California at San Diego

Stroke is a serious and common illness. Data on the incidence of stroke, collected by the American Heart Association, indicate that in the United States there is a stroke about every minute and a person dies of stroke about every 3½ minutes. At the moment, there are 3 to 4 million Americans who had a stroke yet are still alive. The death rate is approximately 30% of all stroke victims. This rate has declined significantly over the last several decades, not due to therapy for stroke, but due to excellent treatment of the complications that occur after a stroke.

We can put the stroke problem into perspective by comparing it to other neurological illnesses ( Figures 1A and 1 B ). For example, Parkinson's disease affects about 50,000 new patients every year, and there are now at least 350,000 Americans with Parkinson's disease. Every year about 400,000 new cases of Alzheimer's disease are diagnosed; there are about 1 million people alive with the disease. About 125,000 new cases of epilepsy occur each year and about 2 million Americans are currently affected. Traumatic brain injury affects 300,000 cases each year; new brain tumors are found in 25,000 people each year.

Clearly, stroke affects more people every year than any of these other illnesses, with Alzheimer's disease coming closest--about 400,000 new cases compared to 500,000 new cases of stroke. And in terms of survivors--patients who require care and patients who require resources--the 3 to 4 million stroke patients far and away present the biggest problem.

What happens to stroke survivors? Recent studies of acute stroke using the modified Rankin disability scale, in which the worst outcome is death (a Rankin score of 5), show that the percentage of patients who die is between 16 and 23% in the first 3 months. On the Rankin scale, a score of 0 or 1 indicates a good outcome, or normal recovery, after stroke. In these studies, only 25% of patients recover fully. Considering the 20% who die, this leaves approximately 55% of stroke patients (those with a Rankin score of 2, 3, or 4) with varying degrees of disability at 3 months after stroke. These numbers are approximately the same at 1 year after the stroke. It is this group that creates an ongoing burden to society, to the patient, and to their families.

These patients are impaired in basic activities of daily living--feeding, bathing, and grooming. What other limitations do handicapped stroke survivors face? Figure 2 shows the results of a survey of such patients (1). The most interesting finding is that 40% of handicapped survivors feel they can no longer visit people. Other significant handicaps include impairments in walking, helping around the house, doing dishes, and cooking. Almost 70% of handicapped stroke survivors report that they can't read. Life for stroke survivors can be bleak: they are no longer as mobile as they once were; they can't read books or the newspaper; they can't enjoy hobbies as they once did; they can't help with the shopping or the gardening. Almost 100% can't help out with the housework. The magnitude of the problem to the individual is enormous.

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We are only beginning to understand how patients react to and feel about their stroke. In the survey results shown in Figure 3 , patients rated their reactions to a series of scenarios, ranging from mild deficits in language, cognition, or motor function up to death (2). Increasing scores on this scale describe the patient's aversion to that particular outcome. What is interesting to me is that a severe motor, cognitive, or language deficit is about the same as dying to elderly patients. In fact, patients would almost rather die than be left with a severe motor or cognitive deficit.

In addition to not being able to do what they once did, these patients require help from outside the home. About half of them need day-hospital services, 40% need home help, 40% have a visiting nurse, and 14% need Meals on Wheels. Another area that we have only begun to explore is the burden on the caregiver. Most of the 50 to 70% of stroke survivors who are handicapped after 1 year require help. If you survey the caregivers and patients, most caregivers respond that they have insufficient resources, meaning financial as well as personal resources. And, not surprisingly, half of the caregivers develop an emotional illness at 1 year after their family member's stroke, primarily depression, but also anxiety and other problems. Caregivers are most often female, either a spouse or a daughter of the victim. And most of these people are forced to give up something, either a job outside the home or time with their own family. This burden and the cost of this burden are enormous and are not yet quantified.

Stroke can result from several different diseases. Of the 500,000 strokes that occur each year, 400,000 are caused by infarctions (most are first-time strokes, some are second-time strokes), and 100,000 are hemorrhagic, either intracerebral or subarachnoid ( Figure 4 ).A hemorrhagic stroke can be a hematoma, a disease that occurs in the same age group and is associated with the same risk factors as infarction. But unlike patients with infarctions, about 60% of patients with a hematoma die. And most of the survivors are left gravely disabled. Subarachnoid hemorrhage is a disease of young and middle-aged adults. There are about 30,000 of these cases every year: 80% of them are due to a ruptured berry aneurysm, 50% of them are fatal, and half of the survivors are left disabled. These patients, since they are only 30 or 40 years old at the time of the stroke, require the same services as older stroke patients but for a much longer period of time. Serious complications of subarachnoid hemorrhage include vasospasm, which can be treated.

Stroke is a very expensive disease. Of the first-year costs, 50% accrues during inpatient hospitalization. But the distribution of costs among patients is skewed: 10% of people account for about 30% of the total cost. And although 80% of strokes are from infarctions, only half of the costs are due to infarction, indicating that hemorrhages account for a disproportionate share of the cost of stroke.

Medical costs for a patient with a mild stroke are approximately $8,000. For patients with more severe strokes, including patients with intracerebral hemorrhage, the cost is approximately $15,000 for an admission for the first year. For patients with subarachnoid hemorrhage, the cost is almost $30,000. These patients are more seriously ill. They spend more time in intensive care units and require more care after discharge from the hospital.

Dying from a stroke doesn't save money. If a patient dies of a stroke, the cost is approximately the same as the cost of caring for a stroke inpatient. A TIA costs about $4,000, on average, for an inpatient. A fatal intracerebral hemorrhage is slightly less expensive than a stroke, and a fatal subarachnoid hemorrhage is about $10,000 less. As we analyze the decision-making process, it isn't necessarily cost-saving to have patients die of their disease.

Finally, I would like to pose a question: "Why don't we get the chance to treat patients more often?" Using data from the NINDS t-PA Stroke Study (3), we find that of the 16,000 potentially eligible patients (those who came to a hospital within 24 hours of their stroke), we were able to diagnose and treat about 600. Most commonly, we could not treat patients because they arrived too late to the hospital (50%). Identifying patients and getting them to the hospital rapidly are the primary obstacles to effective treatment of stroke patients.

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References

1. Anderson CS, Linto J, and Stewart-Wynne EG. A population-based assessment of the impact and burden of caregiving for long-term stroke survivors. Stroke 1995;26:843-849.

2. Solomon NA, Glick HA, Russo CJ, et al. Patient preferences for stroke outcomes. Stroke1994;25:1721-1725.

3. 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.

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Figure 1A. Prevalence of survivors of various disabling neurological conditions.

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Figure 1B. Incidence of new cases of various disabling neurological conditions.

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Figure 2. Self-reported limitations faced by handicapped stroke survivors. [From Anderson CS, et al (1). Used with permission. Copyright 1995, American Heart Association.]

From Anderson CS, et al (1). Used with permission.
Copyright 1995, American Heart Association.

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Figure 3. Patient aversion to various stroke outcomes. [From Solomon NA, et al (2). Used with permission. Copyright 1994, American Heart Association.]

From Solomon NA, et al (2). Used with permission.
Copyright 1994, American Heart Association.

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Figure 4. Incidence and prevalence of stroke.

• 400,000 ischemic strokes per year
  - 75% first time
  - 20% second time
• 100,000 hemorrhagic strokes per year
• 3.1 million current cases

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Last Edited: February 10, 2000

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