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(Stroke. 1995;26:971-975.)
© 1995 American Heart Association, Inc.
Articles |
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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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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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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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 1
.
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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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 2
).
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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
2 test was used to test the
statistical significance of the proportions between different
strata.
| Results |
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About 10% of men and 6% of women aged 64 years or younger had
suffered from a recurrent stroke attack after 1974 (Table 4
). 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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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 5
). Also, about one third of both men and women had
urinary incontinence or language disturbances.
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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 6
). 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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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 6
). 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 6
). 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 6
). 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 7
).
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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| Discussion |
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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 |
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Received December 2, 1994; revision received February 20, 1995; accepted March 10, 1995.
| References |
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