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(Stroke. 1995;26:971-975.)
© 1995 American Heart Association, Inc.


Articles

Psychosocial and Health Status in Stroke Survivors After 14 Years

Jaakko Tuomilehto, MD, MSocSc, PhD; Tarja Nuottimäki, MSocSc; Kalervo Salmi, MD; Kari Aho, MD, PhD; Mervi Kotila, MD, PhD; Cinzia Sarti, MD, PhD Daiva Rastenytè, MD

From the Department of Epidemiology and Health Promotion, National Public Health Institute, Helsinki (J.T., T.N., C.S., D.R.); the Department of Neurology, North Karelia Central Hospital, Joensuu (K.S.); the Department of Neurology, Jorvi Hospital, Espoo (K.A.); and the Neurological Clinic, Helsinki University Hospital (M.K.), Finland.

Correspondence to Professor Jaakko Tuomilehto, National Public Health Institute, Department of Epidemiology and Health Promotion, Mannerheimintie 166, FIN-00300 Helsinki, Finland.


*    Abstract
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*Abstract
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Background and Purpose Most studies of long-term survival and assessment of health status in survivors of stroke are hospital based and are often based only on a relatively short follow-up. This study was aimed at evaluating survival of acute stroke after 14 years. We also assessed psychosocial and health status among the long-term stroke survivors.

Methods This study is a follow-up of the Finnish part of the collaborative World Health Organization Stroke Study that took place during 1972 through 1974. All survivors were interviewed by telephone after being sent a structured questionnaire approximately 14 years after the initial stroke attack. Information on clinical history, socioeconomic situation, self-reported functional capacity, psychosomatic status, perceived mental status, and perceived health was collected.

Results Of the 1241 persons who had been entered in the stroke register from 1972 through 1974, 241 (19.4%) were still alive after 14 years. Participation rate in the telephone interview was 83.4%. Over 80% of all stroke survivors lived at home or with relatives at the time of interview. Functional capacity was good in about two thirds of the stroke survivors. Only 10% to 15% of all respondents felt depressed. About half of both men and women aged 64 years or younger perceived their health as good, while only 25% of men aged 65 years or over did.

Conclusions Most stroke survivors did not need institutionalized care in the long term. Although a large proportion of them suffered from various somatic diseases, their functional capacity was found to be good.


Key Words: activities of daily living • rehabilitation • stroke • survival


*    Introduction
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*Introduction
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Stroke is one of the leading causes of death and severe disability in most countries.1 2 3 Several studies on short-term survival have shown that about 25% to 30% of the patients with an acute stroke die within 4 weeks from the onset of the attack.4 5 6 It has also been shown that the long-term prognosis of stroke patients is not good,7 8 but there are not many prospective long-term studies of stroke. It is important to assess long-term outcome of stroke to adapt treatment and circumstances to the patient's needs, to enhance supportive care, and to evaluate the efficacy of therapeutic interventions.9 10 11 Most of the earlier studies related to short- or long-term prognosis after acute stroke were hospital based, and thus the severity of stroke outcome may be overestimated if extrapolated to the population at large.12 13 14 In addition, little is known about what happens to stroke survivors in the long term because most of the recent studies of health status in stroke survivors include only a few months or years of follow-up.8 15 16

The first large community-based study of stroke was a multicenter study coordinated by the World Health Organization (WHO) in the early 1970s, in which Finland participated.1 The objective of our present study was to evaluate the long-term (14 years) survival of the stroke patients registered during 1972 through 1974 in the Finnish part of the WHO Stroke Register Study and to assess perceived health, psychosocial status, and activities of daily living (ADL) in these long-term stroke survivors.


*    Subjects and Methods
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*Subjects and Methods
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Finnish Stroke Register From 1972 Through 1974
Two Finnish communities participated in the WHO Stroke Register Study in the early 1970s.1 Nonfatal events of acute stroke and deaths from cerebrovascular disease occurring between May 1, 1972, and December 31, 1974, in the province of North Karelia in eastern Finland and in Espoo-Kauniainen in the suburban area of the city of Helsinki in southern Finland were referred to the stroke register. The average yearly population of permanent residents in these areas was used as the denominator for the rates. In North Karelia, the age range of the registered stroke patients was 25 to 74 years, whereas in Espoo-Kauniainen all ages were included.

In both registers, the primary sources of case ascertainment were the admission and discharge diagnoses in the local hospitals and in the wards of the local community health centers. Also, death certificates were screened regularly throughout the registration period. According to the requirements of the WHO Stroke Register Study,1 information about the patients with newly diagnosed acute stroke was collected at arrival in the hospital, after 3 weeks, after 3 months, and at death if applicable. Standardized stroke register forms designed by the WHO Stroke Register group were used in all centers.

Data Collection for the Present Study
During the registration period of 1972 through 1974, 938 stroke cases were registered in North Karelia and 303 in Espoo-Kauniainen, for a total of 1241 cases. Follow-up interviews were carried out about 14 years after the initial registration. Of all stroke patients registered, 241 (19.4%) were still alive after 14 years from onset of the first stroke. Of these patients, 201 (83.4%) could be contacted; they formed the study subjects of the present analyses. Age and sex characteristics of the respondents are shown in Table 1Down. On the basis of information on patient weakness of limbs in Espoo-Kauniainen, 44% of the patients had a lesion in the dominant (left) hemisphere and 37% in the nondominant side, and 19% had no limb problems.


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Table 1. Numbers of Responders Among the Stroke Survivors in the Two Registration Areas by Age and Sex

In the present follow-up study, we used a structured questionnaire and a telephone interview, complementing each other. A sample questionnaire was mailed to the patients in advance to get them acquainted with the questions. They were asked to fill out the form before the scheduled telephone interview. The actual forms used for the study were filled out by a public health nurse in connection with the telephone interview. The sample questionnaire mailed to the patients was not returned because its intention was only to help patients and their family members to familiarize themselves with the questionnaire items to improve the quality, completeness, and speed of the telephone interview. If the patient had language disturbances, the interview was done through a family member or the caregiver assisting the patient. For 31 (15% of all survivors) patients who were hospitalized at the time of the interview and were unable to participate in the interview directly, the interview data were provided by nurses who were in charge of the ward management. Before the actual study, a series of test interviews was carried out for piloting and training purposes.

The questionnaire included items concerning the medical history of the subject: whether he/she had suffered from recurrent strokes, heart attacks, or other severe diseases or had high blood pressure. Furthermore, data on neurological deficits, including degree of disability of the extremities, bladder control, and language disturbances, were also collected.

The second set of questions included socioeconomic items: housing conditions, income, sickness pension, and ability to work after the stroke attack. We also inquired whether the person needed rehabilitation therapy, other kinds of services, or help with household activities.

The main part of the questionnaire focused on functional capacity, psychosomatic status of the patient, perceived mental status, and perceived health. Functional capacity was assessed with questions relating to 17 major ADLs. Our ADL index was formed by four subscales: mobility, household work, recreational, and self-care. An additive ADL index was built from these data items. Since more data items were related to mobility and self-care, these components had a greater impact on the ADL index. The ADL index score varied between 17 and 42. Three categories of ADL index were then formed, defined as (1) good functional capacity (17 to 19 points), (2) medium functional capacity (20 to 29 points), and (3) poor functional capacity (30 to 42 points). The intrascale partial correlations for reliabilities computed for the functional capacity scale represent the degree of association between items within a given subscale. For the functional capacity scale, the reliability was high (0.96), indicating that questionnaire items of the functional capacity reflected the overall functional capacity well (Table 2Down).


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Table 2. Subcategories of the Activities of Daily Living Index and Their Reliability

The index on psychosomatic status was constructed from 13 questions. For each item, alternative codes from 1 to 3 could be chosen to describe no symptoms, mild symptoms, and severe symptoms, respectively. The index varied between 13 and 29, divided into three categories: (1) no symptoms (13 to 17 points), (2) few symptoms (18 to 22 points), and (3) several symptoms (23 to 39 points).

The perceived mental status of the patients was assessed with seven typical psychiatric questions, including a depression scale. The questionnaire items referred to the overall mood of the patients (self-control, nervousness, vigor, fatigue, and happiness), and each item could be assigned a score from 1 to 6, with a low score representing a positive mood and a high score a depressive mood. The overall variation in the depression scale was between 7 and 31, subsequently categorized as (1) good mood (7 to 14 points), (2) melancholic mood (15 to 21 points), and (3) depressive mood (22 to 31 points).

The perceived health of the patients was assessed using the following items: the patient's own perceived health estimate, the frequency of symptoms, and the frequency of occasions when patients had been worried about their health during the last month. Each of the questionnaire item scores varied between 1 and 4, and thus the cumulative index of perceived health varied between 3 and 12. The following three categories of perceived health were created: (1) good perceived health (3 to 6 points), (2) intermediate perceived health (7 to 9 points), and (3) poor perceived health (10 to 12 points).

If a patient's replies to the series of questions required to form subscales as described above were inadequate, the final index was not computed for that patient. Adequate data for all subscales were obtained from 186 patients (92.5% of all respondents).

Statistical Analyses
The computation of the indices was performed after stratification by age (64 years or younger, 65 years or older) and sex. A conventional {chi}2 test was used to test the statistical significance of the proportions between different strata.


*    Results
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*Results
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The socioeconomic situation of the stroke survivors is presented in Table 3Down. Over 90% of both men and women below the age of 65 years and approximately 80% of older subjects lived at home or with relatives. About one fifth of men and one fourth of women less than 65 years old needed assistance with housecleaning or other types of nursing help. The proportions of people aged 65 years or more that needed help at home were 56% among men and 71% among women. More than 80% of stroke survivors were receiving retirement pensions, and over 40% of men and over 30% of women also had a sickness pension because of stroke. Only 14% of men aged 64 years or younger were still working or receiving unemployment benefits, whereas almost 40% of women of the same age belonged to this category.


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Table 3. Socioeconomic Situation of the Stroke Survivors by Sex and Age

About 10% of men and 6% of women aged 64 years or younger had suffered from a recurrent stroke attack after 1974 (Table 4Down). One fifth of all men and one tenth of all women had also had a myocardial infarction. Furthermore, over half of the stroke survivors had at least one other important disease in addition to stroke or heart attack. Over half of the respondents had received drug treatment for high blood pressure.


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Table 4. Proportion of Stroke Survivors Who Suffered From Various Diseases or Were Being Treated for High Blood Pressure After 1974

At the time of the interview, almost two thirds of both men and women had paralysis of the legs and/or arms of different levels (Table 5Down). Also, about one third of both men and women had urinary incontinence or language disturbances.


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Table 5. Proportion of Stroke Survivors With Functional Disabilities by Age and Sex

Severe disabilities were present in 27% of men and 29% of women, and in 42% of men and 34% of women mild disabilities were present (Table 6Down). Functional capacity was good in about two thirds of the stroke survivors. Among patients aged 64 years or younger, only 2% of men and 3% of women had a poor score (>30 points). The proportion of patients with a poor functional capacity increased with age: 25% in men and 22% in women aged 65 years or more. In the subsample of the survivors of the Espoo-Kauniainen, we found that of those with right-side lesions, 30% had problems in functional capacity, whereas none of the surviving patients with left-side lesions had such problems.


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Table 6. Distribution of Physical and Mental Health Indexes Among the Stroke Survivors

Psychosomatic symptoms were common: about 60% of men and women aged 64 years or younger and over 70% of older patients presented with one or more psychosomatic symptoms (Table 6Up). Of the respondents, 71% felt they had been exhausted and stressed during the month preceding the interview. More than half of both men and women reported mental confusion, anxiety, irritability, and dizziness when they were required to work fast (data not shown). Older patients more frequently had psychosomatic symptoms than younger patients. Among men, the symptoms that more frequently increased with age were mental confusion in fast work, dizziness, extrasystolic heart beats, hand tremor, exhaustion, headache, and frightening thoughts. Among women, insomnia, mental confusion, and exhaustion increased with age (data not shown).

About half of the respondents presented with some degree of depression, and 13% were severely depressed (Table 6Up). Women replied more often than men that they were in a good mood. Depression became more frequent with age and with a higher degree of impairment of functional capacity.

Given the multitude of symptoms and the number of reported chronic diseases, only a small number of respondents perceived their health as poor: 7% to 12% of those aged less than 65 years and 17% to 18% of older subjects (Table 6Up). About half of both men and women aged 64 years or younger perceived their health as good, while this proportion was only 25% in men aged 65 years or more.

Regarding ADLs, difficulties occurred mostly in household management (cooking, shopping, using the vacuum cleaner, washing dishes) and in self-care (washing, dressing oneself, etc) (Table 7Down). Most of the respondents could move independently, and recreational activities such as watching television, reading the newspaper, and using the telephone caused no major problems for most of the patients.


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Table 7. Proportion of Stroke Survivors Who Were Able to Cope With the Activities of Daily Living Without Difficulties


*    Discussion
up arrowTop
up arrowAbstract
up arrowIntroduction
up arrowSubjects and Methods
up arrowResults
*Discussion
down arrowReferences
 
There are only a few population-based studies in which stroke patients have been followed up for such a long time as in the present study.7 17 Hospital-based studies may include a referral bias, leading to problems with applicability of inferences made from such studies to the population at large. Our follow-up study was community based, and the initial point of study, the Finnish Stroke Register during 1972 through 1974 as a part of the first WHO collaborative stroke study, was also well designed and standardized.

Almost 20% of acute stroke patients were still alive after approximately 14 years from onset of the attack. The participation rate among the long-term stroke survivors (84%) in our study can be considered good. The index of functional capacity used in this study has very good coverage and versatility, and its reliability is good. The survey method, ie, the combination of a structured questionnaire with a telephone interview, was very practical, especially in collecting information from older and disabled people. This method permitted the respondent to have sufficient time to think about the answers to the questions and discuss them with relatives before the interview. If the stroke patient had communication disorders, the interview was done through his or her caregiver. There are indications that patients' ratings of their overall quality of life reflect a broad range of physical, emotional, and social health concerns.18 Evidence regarding the quality of reports given by caregivers is less clear.19 Some reports suggest that they are reliable and valid.20 Others have found evidence that the social network around the patient underreports health complaints,21 satisfaction, and emotional (perceived) health.22

During the 14-year follow-up of the stroke survivors in our study, more than half had a myocardial infarction or suffered from another chronic disease, and about 30% of the patients reported various severe symptoms. Despite these diseases and symptoms, 85% of the respondents reported good or satisfying health. Even if in about one third of the respondents the impairment of functional capacity was severe due to permanent sequelae of the stroke, only 13% to 15% perceived their health as poor and felt dependent on help from other persons. There was a remarkably small proportion (15%) of persons in the hospital or in other healthcare facilities at the time of the interview. These findings are most probably explained by the natural selection of less severe stroke cases among such long-term survivors.

Many stroke survivors suffer from depression.23 24 25 26 27 28 It is known that reduced social contacts can be a cause as well as a result of depression.23 Varying degrees of depression may be associated with decreased functional capacity and personal and social support.24 An adequate and active treatment of the depression is needed at all levels, including drug therapy,14 psychotherapy and family work,25 support and education, and psychosocial interventions.13 26 In our study, only 10% to 15% of all respondents felt depressed, and only 15% to 16% of all stroke survivors presented their functional capacity as bad. Over 90% of stroke survivors aged 64 years or younger and approximately 80% of those older than 64 years had lived at home. Patients also found supportive services, such as regular home visits by social workers, helpful.

As the number of stroke victims and survivors is increasing along with the aging of the population in most countries, it is important to develop tests to measure functional capacity that, in addition to the ADL scale, would include indexes measuring other aspects of health status and quality of life. Such tests are available for rheumatic disorders,29 cardiovascular diseases,30 and cancer.31 Up to now, only one stroke-specific quality-of-life measure that emphasizes disabilities, the Frenchay Activities Index,32 33 is known. Because stroke patients are often elderly people and have a range of comorbid conditions,34 there is a need to differentiate the effects of stroke from those of aging and to avoid contamination effects of somatic disturbances on measures of emotional distress.35 It is also especially important to clarify the factors that improve or deteriorate functional capacity and quality of life and to assess their reciprocal relation.


*    Acknowledgments
 
This study was supported by a grant from the Finnish Foundation for Cardiac Research.

Received December 2, 1994; revision received February 20, 1995; accepted March 10, 1995.


*    References
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up arrowAbstract
up arrowIntroduction
up arrowSubjects and Methods
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*References
 

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