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(Stroke. 1997;28:2395-2399.)
© 1997 American Heart Association, Inc.

Articles

Quality of Life of Stroke in Younger Individuals

Utility Assessment in Patients With Arteriovenous Malformations

Anne Y. Shin, MD; Phillip J. Porter, MD; M. Christopher Wallace, MD; Gary Naglie, MD

From the Division of General Internal Medicine, Department of Medicine, Toronto Hospital (A.Y.S., G.N.); Program in Clinical Epidemiology and Health Care Research, Toronto Hospital (G.N., P.J.P.) and Sunnybrook Health Science Center, North York, Ontario (A.Y.S.); Brain Vascular Malformation Study Group (P.J.P., M.C.W.); and the Department of Health Administration, University of Toronto (G.N.), Ontario, Canada.

Correspondence to Dr Anne Y. Shin, Sunnybrook Health Science Center, Clinical Epidemiology Unit and Institute for Clinical Evaluative Sciences, G Wing, 2075 Bayview Ave, North York, Ontario, Canada M4N 3M5. E-mail gary.naglie{at}utoronto.ca

	Abstract

Top Abstract Introduction Subjects and Methods Results Discussion References

 
Background and Purpose Patients with arteriovenous malformations are younger individuals who are at risk of a stroke or have experienced one. Our objective was to determine these patients' perceptions of quality of life with a stroke by eliciting utility values.

Methods Utility values were obtained with the standard gamble technique. Utilities are a holistic, quality of life measure between 0 and 1. We evaluated the patients' current health state and written descriptions of major and minor stroke.

Results Thirty-one consecutive outpatients participated. The mean age was 37 years (range, 18 to 57 years). Approximately 65% had suffered a stroke, of which 55% were major. Approximately 61% had a persistent deficit. The mean utilities were 0.45 for major stroke (95% confidence interval [CI], 0.33 to 0.56; range, 0.00 to 1.00), 0.81 for minor stroke (95% CI, 0.75 to 0.88; range, 0.30 to 1.00), and 0.81 for current health (95% CI, 0.73 to 0.89; range, 0.01 to 1.00). Subgroup analyses by demographic and clinical characteristics showed no significant differences. However, in both those patients who had never had a stroke and those who had survived a major stroke, values for the major stroke scenario were clustered at the two extremes. Among those with a current deficit, 79% preferred their own health state to that of the stroke scenario that was similar in severity.

Conclusions Younger people who have had a stroke or are at risk demonstrate wide variations in their perception of quality of life. Furthermore, patients tend to be more risk averse with their own lives than with theoretical scenarios. We suggest tailoring medical decision making to individual preferences.

Key Words: cerebral arteriovenous malformations • quality of life • stroke • adults

	Introduction

Top Abstract Introduction Subjects and Methods Results Discussion References

 
Stroke is the third most common cause of death in North America¹ and a leading cause of long-term morbidity.² Most people survive a stroke, but many are left with a permanent neurological deficit.³ Approximately 3% to 4% of all strokes occur in individuals younger than 55 years.^{4 5} Quality of life is an important issue for stroke survivors because they face a possible lifetime of disability. One method to quantify the quality of life in a health state is utility assessment.

Utility assessment is a rigorous and explicit method of obtaining information on quality of life, which also incorporates patients' values.⁶ Utility values provide comprehensive and holistic measurements of patients' preferences for health states.⁷ These preferences are based on individuals' perceptions of their quality of life in a given health state. Utilities are numeric values, usually between 0 and 1. Commonly, 0 represents death and 1 represents perfect health.

Patients at high risk for stroke or who have experienced strokes themselves have seldom been used as the source of utility values. In addition, younger patients have rarely been targeted. Few studies have obtained utilities for both patients' current health states and imaginary scenarios. Furthermore, the standard gamble technique, considered by many to be the gold standard for utility assessment,⁸ has not been frequently utilized.

In this study we obtained utilities from patients with arteriovenous malformations (AVMs), using the standard gamble method. AVMs are congenital blood vessel maldevelopments that are a significant cause of stroke in younger people.⁹ This study was conducted in conjunction with a cost-utility analysis of surgery versus stereotaxic radiation for treatment of AVMs.¹⁰ We obtained utility values for both imaginary stroke scenarios and current health.

	Subjects and Methods

Top Abstract Introduction Subjects and Methods Results Discussion References

 
Interviews were conducted at the Vascular Malformation Clinic at the Toronto Hospital, Western Division, a tertiary referral center in Toronto, Canada. Consecutive patients attending six clinics from February 15 to April 18, 1996, were asked to participate. Patients were eligible if they had been diagnosed at some point with a cerebral AVM. Individuals younger than 18 years were excluded because of concerns that they would have trouble comprehending the standard gamble technique. Patients participated at their first clinic visit during the study period. Informed consent was obtained. Each patient was interviewed by one of the authors (P.J.P. or A.Y.S.), using a standardized interview schedule similar to that of Naglie et al.¹¹

Demographic information collected included age, sex, and socioeconomic status. Clinical information ascertained included location of the AVM and the presence and severity of a neurological deficit. We defined a major neurological deficit as a state in which the patient has a dense hemiparesis requiring the use of an ambulatory assist device or severe aphasia, such that the patient cannot communicate basic phrases. All other deficits were considered minor. The terms "current" or "previous" deficit were defined with respect to the time of the interview. If a deficit existed at the time of the interview, it was considered a current deficit. If a deficit was experienced at some time before the interview but was not present at the time of the interview, it was considered a previous deficit.

Utilities were obtained for the patient's current life situation and for two imaginary health states: major stroke and minor stroke (Table 1). None of the scenarios included the term "stroke" to avoid potential labeling bias. The major stroke scenario described a hemiplegia of the dominant side that renders the person unable to complete activities of daily living on her/his own. The minor stroke scenario described a predominantly sensory deficit limited to the upper limb of the dominant side, with the only functional limitation being that of slowing of fine-motor tasks.

View this table: [in this window] [in a new window]   Table 1. Stroke Descriptions

Each patient ranked, in order of preference, the major stroke scenario, the minor stroke scenario, and her/his current life situation. This was done to identify potential inconsistencies between the order obtained from simple ranking and the standard gamble technique.

The standard gamble technique involves an individual deciding between two courses of action: (1) choosing the certainty of staying in the current health state for the remainder of her/his life, or (2) choosing to take a "gamble," which either results in perfect health or immediate death.⁶ The probability of the gamble, which results in perfect health, is varied until the individual believes the two choices are the same and cannot identify a preference. The concepts of the standard gamble technique were introduced to the patients in our study with an example of a lottery for cash prizes. The standard gamble technique was then used to elicit utilities for major stroke, minor stroke, and the patients' own lives.

If there was an inconsistency in the preferred ordering of health states between the rank ordering and the standard gamble technique, the interviewer identified this to the participant. If the subject wished to change the rank and/or gamble, she/he was free to do so. If the subject appeared to be confused, the standard gamble technique was reexplained.

The data were analyzed with the use of a statistical software package (Excel 97, Microsoft Corp). All data entries were double entered independently (A.Y.S. and P.J.P.). One-way ANOVA with an overall F test was used to evaluate statistical differences among the three utilities. Student's t tests were used for pairwise comparisons.

	Results

Top Abstract Introduction Subjects and Methods Results Discussion References

 
Thirty-three patients were invited to participate. One refused because he did not want the study to interfere with his clinic visit. One was found to not have a diagnosis of an AVM and was subsequently excluded. The final sample size was 31.

The mean age was 37 years (range, 18 to 57), 45% were women, 29% were nonwhite, and 68% had had higher education, although 68% were unemployed at interview (excluding full-time students). All five (100%) of those with a current major deficit were not working outside the home. All were fluent in English, but one participant required a translator for a few of the more complex passages.

In more than 50% of the participants, the location of the AVM was temporal or parietal. The neurological deficits are outlined in Table 2. Half of the deficits that occurred previously were predominantly motor. Approximately 44% of the current deficits were motor. Only 10% required the use of a cane at interview, and 13% scored less than 95 on the Barthel Index, which indicates that most patients were not severely disabled.¹² Overall, 45% had undergone surgery and 19% had had stereotaxic radiation for treatment of their AVM.

View this table: [in this window] [in a new window]   Table 2. Patients' Clinical Characteristics

All of the patients ranked the major stroke worse than the minor stroke. Seventy-eight percent favored their own lives to the minor stroke state. In five patients (16%), there was a discrepancy between the rank ordering and the standard gamble for minor stroke versus their own lives. In four of these cases, patients ranked their own lives worse than the minor stroke but gambled less with their own lives. Repeating the analysis without these patients did not affect the mean utility values or the standard error.

The mean utility for major stroke was 0.45 (95% confidence interval [CI], 0.33 to 0.56), and the range was 0.00 to 1.00 (Fig 1). The mean utility for minor stroke was 0.81 (95% CI, 0.75 to 0.88), and the range was 0.30 to 1.00. The mean utility for the patients' current health state was 0.81 (95% CI, 0.73 to 0.89), and the range was 0.01 to 1.00. The three utilities were significantly different (P<.0001, one-way ANOVA). There were significant differences between utilities for major and minor stroke (P<.0001, paired t test) and between utilities for major stroke and current health (P<.0001, paired t test). If we excluded the patients who exhibited a discrepancy in the ordering of health states between the rank and the standard gamble techniques, the range of the minor stroke scenario narrowed to 0.50 to 1.00.

View larger version (24K): [in this window] [in a new window]   Figure 1. Scatterplots of major stroke, minor stroke, and current health. Shown are values from those with a current major deficit , a current minor deficit , and no current deficit .

There were no statistically significant differences in utility estimates based on demographic characteristics. There was a trend for women to perceive major stroke to be worse than men (mean utility of 0.37 [95% CI, 0.20 to 0.54] versus mean utility of 0.51 [95% CI, 0.35 to 0.67], respectively; P=.24).

In addition, clinical variables did not produce statistically significant differences in utility estimates. For example, location of the AVM did not affect utility values. Deficit characteristics also did not seem to affect the results. Fig 2 illustrates the utility values for major stroke, obtained from those who had experienced a stroke of any severity (n=21), a major stroke (n=11), and those who had not experienced a stroke (n=10). There was no difference in the utility values for major stroke between those who had ever experienced a stroke and those who had never experienced one (mean utility 0.45 [95% CI, 0.32 to 0.58] versus mean utility 0.45 [95% CI, 0.27 to 0.63], respectively; P=.99). The utility values from those who had never experienced a stroke appeared to be clustered in two groups at the ends of the spectrum, around utility values of approximately 0.2 and 0.9. For those who had experienced a major stroke, there appeared to be two groups as well, clustered around utility values of approximately 0.2 and 0.75.

View larger version (25K): [in this window] [in a new window]   Figure 2. Scatterplots of utilities for major stroke in those who have experienced a stroke, experienced a major stroke, and never experienced a stroke. indicates an individual's utility value.

Three of five people with a current major neurological deficit gave a higher utility value for their own lives than they did for the major stroke scenario. One of them evaluated his life as better than both the major and minor stroke scenarios. Twelve of 14 people with a minor neurological deficit also valued their own lives more than the minor stroke scenario. Therefore, 79% of those with a current deficit preferred their own health state to that of similar imaginary stroke scenarios.

	Discussion

Top Abstract Introduction Subjects and Methods Results Discussion References

 
Table 3 summarizes several studies that have obtained utility values for stroke states,^{13 14 15 16 17} as well as our own. In comparison, our patients were younger and had experienced a stroke or were at high risk of one. Moreover, we used the standard gamble method with anchors of death and perfect health to assess both theoretical stroke scenarios and the patients' current health.

View this table: [in this window] [in a new window]   Table 3. Summary of Selected Previous Stroke Utility Studies

Mean utility values in our study were 0.45 for a major stroke and 0.81 for a minor stroke. To put these values into context, they may be compared with those elicited for other health states. The mean value for a major stroke is similar to mean utility values elicited for end-stage renal disease requiring dialysis¹⁸ and being depressed and lonely much of the time.¹⁹ Examples at the higher and lower ends of the utility scale, respectively, are life with menopausal symptoms, which has been assigned a mean utility value of 0.99, and assistance required for mobility, which has elicited a utility value of 0.31.¹⁹

Our mean value for a major stroke is quite similar to those estimated in other studies (Table 3). The exception is the study by Gage et al,¹⁴ which estimated a median utility value of 0.0 for major stroke. This much lower utility value is probably due to the different upper utility anchor point used in their study compared with our study and others cited in Table 3 (ie, they used current health, rather than perfect health, as the upper utility anchor). Despite the differences in demographic characteristics between our study and others,^{13 15 16 17} similar utility values were elicited. Therefore, our study appears to support the contention that demographic characteristics do not significantly affect utility values.²⁰

When utility values are being assessed, whose values should be considered is controversial. The choices include patients who have experienced a health state, the general public, and health professionals. This controversy stems from conflicting studies, with some suggesting that clinical experience may affect utility values, whereas others do not.²¹ At the outset, we were interested in comparing quality of life between patients who had experienced a stroke and those who were at high risk of a stroke. We did not wish to compare utility values for strokes with utility values for other disease states. For this purpose, some have suggested that patients are the appropriate respondents.²¹ However, a comparison of our results with those from other studies suggests that clinical experience does not seem to significantly affect the utility values for stroke states. This is because our mean utility values are similar to those provided by experts,^{22 23 24} as well as patients who have had a stroke or are at various degrees of risk for a stroke.^{13 15 16 17}

There was a very wide range of patient preference, which is consistent with other studies.^{13 14 16 17 25} Although we did not have enough power to detect differences between those who had experienced a stroke and those who had not, some patterns appear to emerge. For those who had experienced a major stroke and those who had never experienced a stroke, utility values were clustered at the two extremes of the utility range for the theoretical scenario of a major stroke. The high utility estimates may have been due in part to extreme risk aversion to death. Another possible explanation for high utility values in those who had survived a major stroke is that the patients' overall perception of the stroke experience was generally positive. The phenomenon of minimizing the impact of a major adverse event is a well-established coping strategy.²⁶ On the other hand, the low utility values in those who had had a stroke may reflect that their experience was mainly negative, as anticipated by some of those who had never experienced a stroke.

One unique feature of our study is that we asked patients to assess both theoretical health states and their current health state, allowing for comparisons between the two. Overall, we found that most patients are more risk averse when valuing their own health state. Almost 80% with current deficits believed that their own lives were better than the similar imaginary health state. For some patients, this higher self-evaluation may be because their health states were actually better than the imaginary scenario. This was not true, however, for many of our participants. They often faced medical issues related to the AVM itself, which may have diminished their quality of life further than a neurological deficit alone. These medical issues included recurrent seizures and the potential for another stroke. Another possible explanation for this phenomenon of higher self-evaluation is that preferences appear to depend on how people view imaginary scenarios. They may evaluate the scenarios in the context of how they affect a different hypothetical patient rather than themselves.²⁰ In general, people view themselves as better off than others.²⁷ This downward comparison of others is a well-known defensive function that may reduce anxiety and increase feelings of personal control.²⁸

Generalizability of our results may be limited because of the sample size. However, the participants appeared to represent a reasonable cross-section of society, with equal numbers of both sexes and a variety of ethnic origins and socioeconomic levels. In addition, our study was conducted over several months and enrolled consecutive patients with only one refusal. The small sample size did limit our power to make comparisons between subgroups in our patient population.

We conclude that younger individuals who have survived a stroke or are at risk of a stroke demonstrate wide variations in their perception of quality of life with a stroke. Furthermore, people are more likely to be risk averse with their own health states than with theoretical ones. We agree with others^{29 30} who recommend that studies using utility values to decide health policy should consider the impact on the results of using a wide range of stroke utility values. At the patient-clinician level, we suggest that decision making around stroke outcomes should be tailored to the individual's preferences.

	Acknowledgments

 
Dr Shin is supported by a Fellowship from the Medical Research Council. Dr Porter is supported by a Fellowship from the Heart and Stroke Foundation of Ontario and is enrolled in the University of Toronto Surgical Scientist program. Dr Wallace is supported by the Fondation Baxter et Alma Ricard Chair in Cerebrovascular Surgery, University of Toronto. Dr Naglie is partially supported by an Arthur Bond Fellowship from the Physicians' Services Incorporated Foundation. We would like to acknowledge Dr Murray Krahn, Dr Allan Detsky, and members of the University of Toronto Brain Vascular Malformation Study Group for their helpful suggestions. We would also like to thank Diane Parker and the clinical staff of the Brain Vascular Malformation Clinic, Toronto Hospital, Western Division, for their assistance and support.

	Footnotes

 
Reprint requests to Dr Gary Naglie, Division of General Internal Medicine, The Toronto Hospital, General Division, 200 Elizabeth St ENG233, Toronto, Ontario, Canada M5G 2C4.

Received July 14, 1997; revision received September 5, 1997; accepted September 5, 1997.

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This Article Abstract Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Request Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Shin, A. Y. Articles by Naglie, G. Search for Related Content PubMed PubMed Citation Articles by Shin, A. Y. Articles by Naglie, G.