Background
Stroke is one of the leading causes of death and a major cause of disability worldwide. Because of the aging population stroke is highly prevalent and can have a major impact on daily functioning and quality of life [
1,
2].
In the Netherlands, each year about 40% of the older persons who suffer from acute stroke are admitted to an intermediate care facility for geriatric rehabilitation after a period of hospitalisation [
3‐
5]. About half of the older stroke patients who are discharged home after geriatric rehabilitation still experience serious impairments in daily functioning and social participation, caused by severe cognitive and functional incapacities [
6]. In patients who are socially inactive and are lacking appropriate coping skills, these impairments can lead to a substantial decrease in quality of life and depression [
7]. Most older persons who are admitted to geriatric rehabilitation have multimorbidity that can interfere with rehabilitation and therefore may influence outcomes negatively. Besides a negative impact on patients, stroke and multimorbidity may also increase the burden of care perceived by informal caregivers which may also result in a decrease in their quality of life [
7,
8]. Eventually, when the burden for the informal caregiver becomes too high, this may result in permanent admission of the patient to a long-term care facility.
In the Netherlands, stroke care for older patients is organised in stroke services aiming to realise more integrated care. This trend has led to a reduction in mortality, a decrease in admissions to long-term institutional care, more satisfaction among patients and caregivers, and more cost-effectiveness [
9]. Although stroke care has achieved these quality improvements, sufficient aftercare after inpatient geriatric rehabilitation is often lacking in usual care, or when available, is too fragmented which makes it difficult to support patients and their informal caregivers in dealing with stroke related problems at home after discharge from rehabilitation.
Therefore, it seems important that older stroke patients and their caregivers, receive a rehabilitation treatment that includes tailor-made aftercare after discharge from geriatric rehabilitation to facilitate the transition to the home situation and to support patients and their caregivers in coping with the patients’ residual impairments in daily life. Training older patients and their caregivers in effective coping skills to manage their impairments might contribute to living independently in the community and staying socially active as long as possible. In addition, adequate aftercare may prevent negative long-term consequences such as decrease in daily activity level, depression and postpone admission to a long-term care facility [
10,
11]. Therefore, stroke rehabilitation should include structural follow-up treatment in the patients’ home environment to improve functional independence of patients, to train patients in coping strategies to increase the adaptation skills to manage the remaining physical, cognitive and/or psychosocial impairments and improve quality of life, and to provide support for the informal caregiver to decrease the burden of care [
12,
13].
Currently, there is no effective and well-organised aftercare programme available for older stroke patients admitted to geriatric rehabilitation [
14]. Therefore, we developed an integrated multidisciplinary geriatric rehabilitation programme that includes aftercare for older persons with stroke. It aims to facilitate early discharge if possible, to train patients and informal caregivers to cope with the residual impairments by enhancing self-management, to optimise the level of participation after rehabilitation, and to provide support at home after discharge from rehabilitation.
The aim of this study was to evaluate the effects of this integrated programme as compared with usual care on the primary outcome daily activity level, and on the secondary outcomes functional independence, perceived quality of life and social participation of patients, and perceived care burden, objective care burden, and quality of life of their informal caregivers.
Discussion
The results of this study show that the integrated multidisciplinary geriatric rehabilitation programme for older patients with stroke had no significant effect on the primary outcome daily activity as compared to usual care. With regard to the secondary outcomes, the programme showed favourable effects on the patients’ outdoor autonomy and the perceived care burden of their informal caregivers. For the other secondary outcomes, no significant intervention effects were observed.
The lack of effect of the programme on daily activity and most secondary outcome measures might be explained by several reasons. First, the process evaluation which was performed alongside the trial, revealed that part of patients and informal caregivers did not receive all key elements of the programme [
27]. Although almost all patients formulated rehabilitation goals, the GAS method was only used among two thirds of the patients. In addition, the percentage of therapy sessions performed in the patients’ home environment was lower than planned, and only about a quarter of the patients and informal caregivers attended the education sessions. Furthermore, the self-management training was considered by the care professionals as rather complex and difficult to apply for frail older persons, because it was complicated for the patients to develop and carry out action plans by themselves [
27]. As it is widely recognised that in complex interventions often not all aspects of the intervention are completely performed according to protocol and that adaptation to local circumstances may be necessary [
28], it is important to improve the feasibility of the integrated programme by tailoring the goal attainment scaling, self-management training and education sessions more optimally to the population of frail older stroke patients [
27]. In addition the training of care professionals in conducting the programme could be improved. However, despite this, the majority of patients, informal caregivers and care professionals indicated the beneficial aspects of the programme [
27].
Second, a review of Fens and colleagues [
29] performed in 2013 evaluating the effectiveness of multidisciplinary interventions for stroke patients living in the community after being discharged home after hospitalization or inpatient rehabilitation, showed that none of the 11 studies that assessed daily activities reported a favourable effect of the intervention on this outcome. Although these multidisciplinary interventions included different combinations of elements, it clearly shows that improving daily activity among community living stroke patients is very complex, which is also confirmed by the results of our trial.
Based on our results, the increased level of autonomy outdoors of the patients receiving the programme, seems to indicate that despite the lack of increase in the actual frequency of daily activity as measured by the FAI, the level of (outdoor) activities is more in accordance with the needs and wishes of the patients. An explanation for this finding could be that the self-management component of the programme may have improved the coping skills of patients and their informal caregivers, and helped them to have more realistic expectations about the patients’ outdoor activities. The increase in autonomy related to outdoor activities, is an important finding, as De Graaf and colleagues emphasised the need to pay more attention to the social participation of stroke survivors aged over 70 years, since more restrictions in participation were perceived in comparison to younger stroke survivors 1 year after stroke [
30]. Furthermore, increased attention for participation may also contribute to preventing depressive symptoms after stroke [
31].
With regard to the informal caregivers, the integrated programme resulted in a significant reduction in the perceived care burden of the informal caregiver. This may indicate that elements of the integrated programme, such as consultation with the stroke coordinator and stroke education, may support informal caregivers in accomplishing their supporting role. This is in accordance with the results of a review of Visser-Meily and colleagues [
32] who concluded that counselling programs which focus on the problems of the informal caregiver, instead of (only) on the problems of the patients, appear to have the most favourable outcomes. In our programme, the problems and experiences of the informal caregiver were explicitly addressed in different modules.
This study is one of few studies that focusses on improving stroke rehabilitation and aftercare for frail older stroke patients and their informal caregivers. However, this study has several limitations. First, we did not reach our inclusion goal of 256 patients, although we took all possible and necessary actions (i.e. extending inclusion period, extending the number of nursing homes) to increase the number of patients. This may have underpowered our multilevel analyses. However, the estimated difference between intervention and usual care group on our primary outcome daily activity (i.e. 1.69) is below the minimal effect that is still considered clinically relevant (i.e.3.5). Therefore, it is unlikely that including the intended number of patients would have resulted in a statistically significant effect on our primary outcome. However, for the psychosocial functioning subscale of the Stroke Specific Quality of life scale (p = .054) accounts that a higher power may have resulted in a statistical significant favourable effect for patients in the intervention group on this subscale.
Second, because we randomised on patient level and not on nursing home level, care professionals treated both people in the intervention group and usual care group. Therefore, it is possible that treatment for persons in the usual care group was contaminated with elements of the programme which may have led to an underestimation of the effects of the programme. Although a number of elements of the programme were exclusively available for persons in the intervention group (such as the meetings with the stroke care coordinator, the multidisciplinary outpatient rehabilitation, and the stroke education course), it is still possible that other elements of the intervention were also applied among persons in the usual care group. However, we have tried to reduce this risk of contamination by emphasizing during the training of the care professionals that the programme elements should exclusively be applied in the intervention group. In addition we repeatedly checked whether contamination has occurred during regular visits of the research team to the participating organisations. During these visits care professionals confirmed that the intervention was only applied to persons in the intervention group. Furthermore, after the intervention period, we checked during a group interview with a sample of the participating care professionals whether contamination had occurred, which was not the case according to the care professionals.
Third, patients, caregivers and care professionals could not be blinded for treatment allocation, which might have created some bias. However, in order to reduce the risk of any additional bias, the outcome measurements were performed by research assistants who were blinded for treatment allocation, and the same accounts for the statistical analyses.
Fourth, there could have been interference by possible language disturbances caused by stroke. Although we examined cognition by the MMSE we cannot rule out the fact that possible aphasic syndromes may have caused interference because we did not conduct a specific language assessment for stroke. Despite that, randomisation limited the chance that any possible language disturbance in our population influenced our results.
Fifth, the baseline measurement of the FAI was based on the activity level of patients 3 months before stroke occurred, as estimated by the patient. It is possible that this resulted in recall bias. However, it is likely that this accounts for patients in both the usual care and intervention group, which makes it unlikely that is has influenced our results.
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