A Long-term Follow-up of Stroke Patients
Background and Purpose Two hundred ninety-one residents of southeast London, younger than 75 years, suffered their first stroke in 1989/1990. The objectives of this study were to determine the long-term outcome of this cohort of stroke patients in terms of impairment, disability, handicap, and quality of life and their use of services and prevention measures subsequent to their stroke.
Methods The survivors and their identified caregivers were traced and completed a structured interview questionnaire that included the Barthel Index, modified Rankin Scale, Hospital Anxiety and Depression Scale (HAD), Mini-Mental State Examination, Frenchay Activities Index, and Caregiver Strain Index.
Results One hundred twenty-three people (42%) were alive, of whom 106 were interviewed. The mean interval between the stroke and the long-term follow-up was 4.9 years. Thirty-one of the survivors (29%) were severely or moderately disabled, 39 (37%) were mildly disabled, and 36 (34%) were functionally independent. Of the 96 people who completed the HAD, 35 (36%) had scores suggesting that they were depressed or had borderline depression. The most likely nontherapy services to have been provided were chiropody and district nursing. Five people had received respite care. Of the 104 subjects for whom information about their home was available, 53 (51%) had had an adaptation. Seventy-five people (71%) had an aid or appliance. Sixty-five people (61%) were on aspirin, and an additional 14 (13%) were on warfarin. Fifty subjects (47%) identified a main caregiver. No one with a moderate or more severe disability was living at home without an identified caregiver.
Conclusions The levels of both health and social service provision are likely to be inadequate for this population. The use of prevention measures is encouraging. There is a clear need for a coordinated policy to guide assessment and management across sectors.
Although stroke is a major public health issue, little has been published on long-term stroke outcome in the United Kingdom1 2 on which decisions can be made regarding service provision. Both the Oxfordshire Community Stroke Project3 and the study by Weddell and Beresford1 used general practice–based populations. Other studies have tended to follow a group of hospital patients for several years.4 The distinction between whether or not the study population is community based is important because not all stroke patients are admitted to the hospital. In the original work on the cohort used in this study, 22% of patients were not admitted to the hospital.5 The aim of this study was to investigate the longer-term outcome of stroke, as well as the service provision and use of preventive measures, for residents of a deprived inner city area.
Subjects and Methods
In 1989/1990 a community stroke register was established in southeast London.5 The register used the World Health Organization definition of stroke.6 All people younger than 75 years suffering their first-ever stroke were notified by GPs, district nurses, rehabilitation services, and hospital physicians.
Information was collected regarding demography, date of stroke, maximum clinical impairment, therapy services received, and an assessment of the patients’ premorbid level of disability and handicap according to the Barthel7 and modified Rankin8 scales. The patients were reassessed at 3 months.
For this study those survivors who had lived in London at the time of their stroke were traced and invited to take part by their GP (ie, the subjects on the original register who lived in Tunbridge Wells were excluded). Information was collected regarding service use as well as outcome. The analysis focused mainly on service provision in relation to disability. The subjects completed a structured interview questionnaire that included the Barthel and modified Rankin scales, the HAD,9 the Mini-Mental State Examination,10 and the Frenchay Activities Index.11 Caregivers completed the HAD and the Caregiver Strain Index.12 The subjects reported on coexisting diseases, including hypertension, as part of the structured questionnaire.
A random sample of one in 10 of the patients’ GP records was used to validate the responses.
For those patients in private accommodations, factors determining whether a service, aid, adaptation, or appliance had ever been received were analyzed with the use of backward stepwise logistic regression. Variables considered for inclusion in the model were age, ethnicity (white versus other), sex (male versus female), identified caregiver (yes versus no), and Barthel Index score (20 versus 0 to 19). Variables were selected for inclusion in the model at the 5% level of significance. Survival analysis was performed by the Kaplan-Meier method.13 Patients were censored on the day of the interview or, for those not interviewed, on the last day they were known to be alive. Whether the patients lost to follow-up were known to be alive was clarified through the National Health Service Central Register. The project received local ethical approval, and the subjects gave informed consent.
Two hundred ninety-one people were registered in the first year of the register. At follow-up, 14 patients (5%) were lost, 154 (53%) had died, 9 declined to participate or their GP felt it was inappropriate for them to be interviewed, 7 failed to respond to several requests for an interview, and information about 1 person was obtained by telephone. The remaining 106 (36% of the original 291, and 77% of the 137 survivors) were interviewed. The informant was the subject in 100 interviews; the main caregiver was interviewed in four cases, and a healthcare professional in the nursing home where the remaining two subjects lived was also interviewed. It was possible to review the GP records of 12 of the 16 people who declined or did not respond. Some information was available for 119 (97%) of the 123 people known to be alive.
The length of follow-up for all subjects was not exactly 5 years. The estimated proportion alive at 5 years was 46% (95% CI, 39.9% to 52.1%).
Table 1⇓ compares details of the survivors who were interviewed with those not interviewed or lost. In the following discussion only the data collected from the 106 personal interviews have been used.
Ninety-four people (89%) were living in private accommodations, and 29 were living on their own. Of the remainder, 8 were permanently in an institution (in most cases a nursing home), 1 was in a sheltered house with a paid daytime caregiver, and 3 had recently been admitted to the hospital. Before the stroke all subjects had lived in private accommodations. Only 5 subjects were employed full time; the majority (77 [73%]) were retired.
At the time of the interview, 103 of the subjects were fully conscious, 2 were somnolent, and 1 person was in a persistent vegetative state and is not included in the following clinical details. Fifty-nine people (56%) had a hemiparesis, and 37 (35%) reported a speech disturbance resulting from the stroke, but 24 of these could be completely understood. Eleven people (10%) had difficulty swallowing as a consequence of the stroke, and 3 (3%) were permanently catheterized. Ninety-eight completed the Mini-Mental State Examination. Of these, 27 (28%) scored 24 or less, suggesting a cognitive disorder.14
On the HAD, scores of between 8 and 10 were considered borderline, and scores of 11 or more were considered to indicate depression or anxiety. Of the 96 people who completed the HAD, 22 (23%) had scores suggesting depression and 13 (14%) were borderline. Eighteen (19%) had scores suggesting they were clinically anxious, and 12 (13%) were borderline. Eleven subjects had scores suggesting both anxiety and depression. Only 6 of the 36 functionally independent (Barthel scores of 20) subjects had depressed or borderline scores, compared with 29 of the 60 subjects with some disability (scores of 0 to 19) (P=.0018, χ2 test).
The Barthel scores of the 106 people interviewed were divided according to the categories developed by Wade and Langton-Hewer.15 Fourteen (13%) were very severely or severely disabled (Barthel scores of 0 to 9), 17 (16%) were moderately disabled (scores of 10 to 14), 39 (37%) were mildly disabled (scores of 15 to 19), and 36 (34%) were functionally independent (score of 20).
Only 4 subjects had a prestroke score of less than 20. Of the 103 who had been assessed for a Barthel score at 3 months, 56 (54%) were in the same category at 5 years, 7 (7%) had improved, and the remaining 40 (39%) had deteriorated by at least one category. As Table 2⇓ shows, the activities that people needed help with most often were bathing, climbing stairs, dressing, and feeding. The majority of people living in private accommodations who needed help had an identified caregiver.
According to the modified Rankin scale, 38 people (36%) had either no symptoms or symptoms that did not interfere with their capacity to look after themselves (scores of 0 to 2). The majority with a moderate or more severe disability performed very few of the activities included in the Frenchay Activities Index (Table 3⇓).
The subjects had a high level of comorbidity, predominantly vascular diseases and diabetes (Table 4⇓). Sixty-five people (61%) were on aspirin, 14 (13%) on warfarin, and 59 (56%) on antihypertensives. Treatment with warfarin was initiated by the hospital in all cases. This was true for 44 (68%) of the patients on aspirin and 26 (44%) of the patients on antihypertensives. Ninety-three people (88%) and 55 (93%) of those on antihypertensives reported having their blood pressure measured in the last year, usually (68%) by their GP.
Most people (85%) reported drinking less than eight units of alcohol each week. Although 76 people (73% of 104 with 2 unknown) were current smokers at the time of the stroke, only 32 of the 106 (30%) were at the 5-year follow-up.
All subjects had been seen by their GPs since the stroke. Subjects were not always able to distinguish between therapy services received in the hospital and those after discharge. Forty people (39% of responders) reported receiving physiotherapy, 13 (13%) speech therapy, and 6 (6%) occupational therapy. Thirty-two people (30%) had received chiropody, 30 (29%) had used district nursing services, 25 (24%) had attended a day center, 12 (12%) had attended a day hospital, 23 (22%) had used local authority home help and 6 (6%) private home help, 17 (16%) had received Meals on Wheels, 5 (5%) had used respite care, and 2 (2%) had seen a community psychiatric nurse. Nine people (9%) recalled having contact with the Stroke Association. Table 5⇓ shows some of the services received according to the Barthel score at 5 years. Table 6⇓ shows the frequency of the services received at the time of the interview for people in private accommodations.
Backward stepwise logistic regression showed that district nursing was more likely to be provided if the subjects were nonwhite (P=.04; OR, 3.14; 95% CI, 1.05 to 9.37). The subjects were more likely to have home help if they were disabled (P=.0074; OR, 7.59; 95% CI, 1.58 to 36.61), female (P=.0007; OR, 7.67; 2.08 to 28.27), or did not have a caregiver (P=.001; OR, 11.43; 95% CI, 2.41 to 54.25). Receiving Meals on Wheels was more likely if the subject was disabled (P=.016; OR, 6.55; 95% CI, 1.32 to 32.48) or did not have a caregiver (P=.04; OR, 4.21; 95% CI, 1.05 to 16.84). Only disability (P=.0005; OR, 8.94; 95% CI, 1.95 to 41.14) predicted attendance at a day center.
Of the 104 people for whom information about their home was available, 53 (51%) had had at least one adaptation, usually a grab rail in the bathroom or toilet. Seventy-five people (71%) had an aid or appliance to help them with everyday activities. Thirty-seven people had a wheelchair, and 63 had a walking stick or frame to help with mobility. Forty had items to help with bathing and toileting and 16 to help with eating.
Backward stepwise logistic regression showed that the subjects were more likely to have had an adaptation (P<.0001; OR, 16.28; 95% CI, 5.38 to 49.20) or an aid or appliance (P<.0001; OR, 6.00; 95% CI, 2.33 to 15.46) if they were disabled.
Fifty people (47%) identified a main caregiver, usually a spouse (72%) or a son or daughter (20%). In 29 cases the caregiver was female. The median age of the caregivers was 65 years, with a range from 26 to 87 years. Nine people with caregivers had a Barthel score of 0 to 9, 13 a score of 10 to 14, 25 a score of 15 to 19, and 3 a score of 20. Of the 31 people who were very severely, severely, or moderately disabled, the 21 who were living in their own home all had a caregiver.
Five of the 37 caregivers who completed the HAD had scores suggesting an anxiety state, and 7 were borderline. Three had scores suggesting that they were depressed, and 3 were borderline. Of the 38 caregivers who completed the Caregiver Strain Index, 8 had scores of 7 or more, suggesting increased stress. The statements on the Caregiver Strain Index with which more than half of the respondents agreed were that it was upsetting that the patient had changed so much (58%), that some behavior was upsetting (53%), and that there had been changes in personal plans (53%).
The people assessed in this study were a representative sample of younger stroke patients, whose burden of disease at this longer-term follow-up is likely to be stroke related. The study has provided a survey of their lives 4 to 5 years after the stroke and is likely to be representative of stroke patients living in an inner city. Some of the findings are clearly generalizable, but the variations in the provision of care in different countries will affect the levels of service provided.
This is a retrospective study of the use of services and is therefore subject to recall bias from the patient’s point of view. The validation exercise was most useful for the medical aspects of follow-up and showed good agreement between reported responses and the GP records.
A third of the subjects were assessed as functionally independent, and a third were mildly disabled. This is similar to the findings of a hospital-based cohort of subjects of all ages 3 years after stroke.4 Although only one third were functionally independent, 89% were living in private accommodations. As Wade and Langton-Hewer15 found at 6 months after the stroke, the activities for which most people required assistance were bathing, climbing stairs, and dressing. This provides insight into the help and support the caregivers and services were providing and could be developed to estimate the needs for services. Approximately half the subjects were in the same disability category at 5 years as they were at 3 months, and nearly all the rest had deteriorated. This could be the result of interobserver variation, although the Barthel Index has good reliability.16 More probably it is due to changes associated with the cohort aging, and the effects of other diseases may be the most significant aspect. The absence of a control group precludes such a comparison.
The subjects’ anxiety and depression scores suggest that the high levels of depression found in other studies at 1 year17 and at 3 years4 after stroke continue in the longer term. As judged by the modified Rankin scale, just over one third of the subjects were functionally independent. Not surprisingly, whether or not an individual performed the activities on the Frenchay Activities Index depended on the level of their disability.
A high percentage of the subjects were on aspirin, usually initiated by the hospital. Because it was not known whether the underlying stroke was ischemic or hemorrhagic, it is not possible to determine the appropriateness of the antiplatelet therapy. However, when we take into account those people on warfarin and those with contraindications to aspirin, the overall percentage of subjects on aspirin compared favorably with the findings of Gariballa et al.18 However, it is still likely that a number of the subjects were not receiving appropriate treatment.
The findings of frequent blood pressure monitoring, cessation of cigarette smoking, and moderate alcohol consumption were also reassuring. However, there was still room for improvement. Consideration should be given to which physician should follow up stroke patients to ensure that all risk factors have been monitored and the appropriate advice and preventive measures given. Should the subsequent management of stroke patients be directed by the admitting physician or GP, by a stroke specialist, or by a combination of physicians (as in diabetes)? There is a clear need for a coordinated local policy with protocols to guide assessment and management.
The services most frequently used by the survivors were similar to those determined in other studies in the United Kingdom at 1 year19 and at 4 years1 after stroke. Legh-Smith et al19 and Clark and Opit20 found that the level of disability and the presence or absence of a caregiver influenced service provision. The presence of a caregiver could influence the services provided in different ways. The caregiver may cook, clean, and shop for a very disabled patient who therefore does not require those services from elsewhere. However, nursing help may be required with bathing. Mildly disabled patients without caregivers may require Meals on Wheels and home help but not nursing help to allow them to stay in their own homes.
Because the Barthel scores of very few subjects improved between 3 months and 5 years, the data for services at 5 years provide some insight into the targeting of services. The low level of the overall service provision for a group of predominantly elderly disabled people (with 21 severely or moderately disabled subjects living in private accommodations) was the most striking finding. Although the services may have been targeted, this attempt has probably been inadequate and is unlikely to have met the real needs of the subjects and their caregivers. Either informal caregivers or the patients themselves have attempted to compensate for the lack of services. The lack of service noted in our study is supported by the findings of Phillips.21 Services to stroke and other disabled patients need to be coordinated and ideally brought together under one joint management structure. This will only be achieved through intersectoral collaboration and requires a district-wide approach. Whether this revised arrangement would meet the need would have to be monitored before any increase in funding was made. The requirement for local health and social services to define the client groups for whom they will be providing continuing care should have resulted in closer cooperation. However, the lack of adequate funding may instead result in both sides simply defining the limits of their services.
Caregivers provide a great deal of support to patients who would otherwise only obtain this help from the various professional agencies, as evidenced by our finding that no patient with a moderate or severe disability was living in private accommodations without a caregiver. The caregivers of these patients must receive adequate and appropriate support from the services so that they can continue in this role if they wish. The challenge to the services is to provide a similar level of support for those disabled people who wish to live in their own home but who have no caregiver.
Selected Abbreviations and Acronyms
|HAD||=||Hospital Anxiety and Depression Scale|
This study was supported by R&D Northern and Yorkshire Regional Health Authority and the Stroke Association. We would like to thank all the subjects and their caregivers for their help with this study. We would also like to thank local healthcare professionals for their help in establishing the original register and for their help in approaching the subjects.
- Received October 24, 1996.
- Revision received December 10, 1996.
- Accepted December 10, 1996.
- Copyright © 1997 by American Heart Association
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