Family Support – Acute

Evidence Reviewed as of before: 25-06-2012
Author(s)*: Dr. Nicol Korner-Bitensky (PhD); Annabel McDermott (OT)
Patient/Family Information Table of contents

Introduction

Stroke can impact substantially on many aspects of life for the person who experiences a stroke, as well as his/her family. This module provides information on the value of various interventions such as education about stroke, counselling, and specific training regarding how to manage after a stroke.

Patient/Family Information

What is family support?

Family support is the physical and emotional care and support that is given to individuals with stroke. Individuals who have had a stroke may require assistance with task and activities that they were previously able to do independently. Most often it is family and close friends who provide this support.

Family support also supports actions and informs family members and caregivers about the various rehabilitation interventions and how they can contribute to the rehabilitation of the person with stroke.

What support-based interventions are beneficial to individuals with acute stroke?

Evidence from scientific studies show that different types of support may be beneficial for individuals with acute stroke. These include:

Intensive Discharge Transition Preparation

Transition preparation programs aim to help patients return to home safely and in a timely manner. One study looked at the benefit of an intensive discharge transition service that included therapeutic weekend care at home before standard discharge, a training course and educational seminars for family carers, and telephone counselling. This program was found to improve patients’ health status. However, it did not have a significant impact on patients’ independence or emotional wellbeing.

Group Education Programs

Studies have shown that group education programs (e.g. lectures, seminars and discussion groups) can improve patients’ knowledge of stroke and their satisfaction with the intervention they receive during stroke rehabilitation. However, group education programs have not been found to improve patients’ emotional wellbeing, quality of life or independence.

Other interventions that have been examined by scientific studies include:

Family Support Officers

Several studies have looked at the benefits of support services such as a Family Support Officer or similar support worker. Family Support Officers provided services such as education, emotional support, home visits, telephone contact and assistance in accessing resources. It was found that these support services do not improve patients’ emotional wellbeing, activity/participation, quality of life or knowledge of stroke. However, there are mixed results as to whether these services can benefit patients’ satisfaction with the intervention they receive during stroke rehabilitation.

Written Information

Written information packages (such as brochures and educational leaflets on stroke) have been found to cause no significant improvement in patients’ knowledge of stroke or their satisfaction with the information provided to them about stroke. Further, written information packages have not been found to improve patients’ emotional wellbeing, quality of life, independence or ability to access community services.

Integrated Care Pathways

An integrated care pathway is a care plan that is developed by the multidisciplinary team to help with the patient’s recovery. Studies have found that integrated care pathways do not significantly improve patients’ satisfaction with the care they received, their quality of life, or their independence after stroke.

What support-based interventions are beneficial to family/friends of individuals with acute stroke?

A number of scientific studies have investigated the impact of support-based interventions for carers of individuals with stroke.

Group Education Programs

Participating in a group education program may improve carers’ knowledge of stroke. However, studies show that group education programs do not improve carers’ emotional wellbeing, quality of life or satisfaction with care.

Family Support Officers

Results regarding the benefits of family support services (e.g. Family Support Officers) are mixed. It was found that family support services may improve factors such as carers’ health status and quality of life, and their level of satisfaction with services. However no significant benefits were found in terms of carers’ knowledge of stroke, activity and participation, or emotional wellbeing.

Written Information

There is some research to suggest that written information (e.g. leaflets regarding stroke) may improve carers’ quality of life. Written information packages have not been found to benefit carers’ knowledge of stroke, satisfaction with the information they received, emotional wellbeing or quality of life after the patient’s stroke.

Cognitive Assessments

One study gave patients a thorough cognitive assessment and recommendations that were individualised according to the patient’s difficulties. Results from the study found that this treatment did not improve carers’ emotional wellbeing.

Intensive Discharge Transition Preparation

Studies show that intensive discharge transition services (i.e. weekend care at home before standard discharge, a training course and educational seminars for family carers, and telephone counselling) do not improve carers’ quality of life or emotional wellbeing.

Integrated Care Pathways

An integrated care pathway is a care plan that is developed by the multidisciplinary team to help with the patient’s recovery. Studies have shown that integrated care pathways do not improve carers’ satisfaction with care or emotional wellbeing.

How does providing support affect the caregiver?

Taking responsibility for the well-being of a family member or friend with stroke is often challenging. Because stroke occurs suddenly, there is often no time to get used to a change in heath and functioning. Caregivers often experience sadness, anger, frustration, depression and loneliness, as the demands and stress of caring for your family member or friend increases. It is important to recognize and understand these feelings to prevent becoming too overwhelmed and experiencing “caregiver burn-out.”

Recognizing warning signs that you may be “burned-out” is important. If you are experiencing any of the following symptoms you should consider reaching out to others around you for help:

  • decreased energy
  • compromised immune system (getting sick frequently)
  • constant exhaustion
  • lacking in your own personal care
  • constantly irritable
  • impatient
  • difficulty relaxing or taking time for yourself

You may find it beneficial to learn as much as you can about your loved-one’s condition, and be realistic in how much you have to give to someone (both mental and physical resources). Seeking help for yourself as well is essential, and there are a number of resources available to help you cope. Many people are in this situation. You are not alone.

Top 10 Tips for Caregivers

The National Family Caregivers Association offers these 10 tips for family caregivers.

  1. Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
  2. Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time just for you.
  3. Watch for signs of depression and don’t delay in getting professional help when you need it. Download a printable depression self-assessment from the American Medical Association*.
  4. When people offer to help, accept the offer and suggest specific things they can do.
  5. Educate yourself about your loved one’s condition. Information is empowering.
  6. There’s a difference between caring and doing. Be open to new technologies and ideas that promote your loved one’s independence and help you do your job easier.
  7. Trust your instincts. Most of the time they’ll lead you in the right direction.
  8. Grieve for your losses, then allow yourself to dream new dreams.
  9. Stand up for your rights as a caregiver and as a citizen.
  10. Seek support from other caregivers. There is great strength in knowing that you are not alone.

Where can I get information about assisting family members with stroke?

Your local hospital may be able to give you information about caring for a family member or friend with stroke. Here are a number of other resources that may help as well.

  1. StrokEngine: https://www.strokengine.ca
  2. Canadian Stroke Network: http://www.canadianstrokenetwork.ca
  3. Heart and Stroke Foundation of Canada: http://www.heartandstroke.ca
  4. Stroke Recovery Association of British Columbia: http://www.strokerecovery.bc.ca
  5. American Stroke Association: http://www.strokeassociation.org
  6. American Heart Association: http://www.americanheart.org
  7. National Family Caregivers Association: http://www.thefamilycaregiver.org
  8. The Internet Stroke Center: http://www.strokecenter.org
  9. SAFE (Stroke Awareness for Everyone, Inc.): http://www.strokesafe.org
  10. National Stroke Association References: http://www.stroke.org
  11. Home Health Care Agencies: https://www.homehealthcareagencies.com/resources/caregiving-tips/

Clinician Information

Note: When reviewing the findings, it is important to note that they are always made according to randomized clinical trial (RCT) criteria – specifically as compared to a control group. To clarify, if a treatment is “effective” it implies that it is more effective than the control treatment to which it was compared. Non-randomized studies are no longer included when there is sufficient research to indicate strong evidence (level 1a) for an outcome.

Numerous studies have explored aspects of family-directed intervention in the acute, subacute and chronic phases of stroke rehabilitation. For the purpose of these modules, research that investigates interventions during the acute phase of stroke recovery has been examined separately to those that investigate interventions used during the subacute and chronic phases of stroke recovery.

Studies have examined the effects of approaches such as written information, group education classes and lectures, family support services, integrated care pathways, intensive discharge transition support and comprehensive cognitive evaluation. Outcomes that are typically evaluated in both the patient with stroke and their carer include emotional well-being, stroke-related knowledge, satisfaction with information/intervention, activity and participation, quality of life and health status.

Overall, the findings suggest that in the acute phase of stroke recovery, group education programs can improve stroke knowledge among patients and carers. Group education programs also promote satisfaction with services among patients, while family support programs improve carers’ satisfaction with services. Written educational material may benefit quality of life among carers but not patients. Intensive discharge transition support services were the only intervention found to improve patients’ health status. No particular intervention is effective in improving patients’ and carers’ emotional wellbeing or activity/participation.

Outcomes

Family Support Through Trained Professional Support Officers

Activity and participation - Carers
Conflicting
4

Two high quality RCTs (Mant et al., 2000 – and a follow-up study Mant et al., 2005; Dennis et al., 1997) and one fair quality RCT (Lincoln et al., 2003) examined the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on activity participation of carers of patients with acute stroke.

The first high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ activity participation was assessed by the Frenchay Activities Index (FAI). Results showed significant between-group differences in favour of the intervention group compared to the control group at 6 months post-stroke.

In a follow-up (Mant et al., 2005) to the above study, between-group differences in carers’ activity participation (as measured by the FAI) did not remain significant at 12 months post-stroke.

The second high quality RCT (Dennis et al., 1997) randomized patients and their carers to either an intervention group that received FCW services or a control group that received usual care. Carers’ activity participation was assessed by the FAI. No significant between-group differences were found at 6 months post-randomization.

The fair quality RCT (Lincoln et al., 2003) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ activity participation was assessed by the Nottingham Extended Activities of Daily Living scale. No significant between-group differences were found at 9 months post-randomization.

Conclusion: There is conflicting evidence (level 4) as to whether family support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are more effective than usual care in improving carers’ activity participation in the acute care period. While one high quality RCT found significant short-term improvement in carers’ activity participation in favour of the intervention group, results did not remain significant 6 months later. A second high quality RCT did not find any significant differences between groups. Furthermore, one fair quality RCT also did not find any significant difference between the groups.

Note: The intervention group in both high quality RCTs received counselling and support to access health and social resources; however the intervention group that demonstrated improved activity participation also received information brochures, hospital and/or home visits, and telephone contact from the Family Support Officer.

Activity and participation - Patients
Not effective
1A
Emotional wellbeing - Carers
Not effective
1A

Three high quality RCTs (Mant et al., 2000 – and a follow-up study Mant et al., 2005; Dennis et al., 1997, Forster & Young 1996) and one fair quality RCT (Lincoln et al., 2003) examined the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on the emotional wellbeing of carers of patients with acute stroke.

The first high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ emotional wellbeing was assessed by the General Health Questionnaire-28 (GHQ-28). No significant between-group differences were seen at 6 months post-stroke.

In a follow-up (Mant et al., 2005) to the above study, no significant between-group differences in carers’ emotional wellbeing (measured by the GHQ-28 and Carer Strain index – CSI) were found at 12 months post-stroke.

The second high quality RCT (Dennis et al., 1997) randomized patients and their carers to either an intervention group that received FCW services or a control group that received usual care. Carers were assessed for emotional wellbeing by the General Health Questionnaire (GHQ-30), Hospital Anxiety and Depression Scale (HADS), Social Adjustment Scale (SAS) and Caregiving Hassles Scale (CHS). At 6 months post-randomization, significant between-group differences were found for mood symptoms (GHQ-30) and borderline differences in anxiety (HADS) and hassles (CHS), in favour of the intervention group compared to the control group.

The third high quality RCT (Forster & Young, 1996) randomized patients and disability and their carers to either a treatment group that received information, advice and support from a nurse specialist, or a control group that received usual care. Carers’ emotional wellbeing was assessed by the GHQ-28. No significant between-group differences were found for carer stress at 3, 6, or 12 months.

The fair quality RCT (Lincoln et al., 2003) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ emotional wellbeing was assessed by the General Health Questionnaire-12 (GHQ-12) and the CSI. No significant between-group differences for carers’ emotional wellbeing were found at 4 months or 9 months post-randomization.

Conclusion: There is strong evidence (level 1a) from 2 highquality RCTs and 1 fairquality RCTfamily support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are not more effective than usual care in improving carers’ emotional wellbeing in the acute care period.

Note: However, another high quality RCT found improved emotional wellbeing and trends towards reduced anxiety and hassles in favour of the intervention group compared to the control group. While all groups received information and support to access community services, the group that demonstrated significantly improved emotional wellbeing also received counselling and assistance to access health, social and volunteer services.

Note: Each of the studies used a different version of the GHQ. Accordingly, it may be that the use of the GHQ-30 enabled measurement of emotional wellbeing that was more sensitive to the detection of small group differences than the GHQ-12 or GHQ-28.

Emotional wellbeing - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 2000 – and a follow-up study Mant et al., 2005; Dennis et al., 1997) and one fair quality RCT (Lincoln et al., 2003) examined the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on the emotional wellbeing of patients with acute stroke.

The first high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Patients’ emotional health was assessed by the Hospital Anxiety and Depression Scale (HADS). No significant between-group differences were reported at 6 months post-stroke.

In a follow-up (Mant et al., 2005) to the above study, no significant between-group differences in patients’ emotional health (measured by the HADS) were found at 12 months post-stroke.

The second high quality RCT (Dennis et al., 1997) randomized patients and their carers to either an intervention group that received FCW services or a control group that received usual care. Patients were assessed 6 months post-randomization for emotional wellbeing by the General Health Questionnaire (GHQ-30), HADS, Social Adjustment Scale (SAS), and the non-standardized Mental Adjustment to Stroke Scale. At 6 months post-randomization there were significant between-group differences in relation to social adjustment (SAS), in favour of the control group. There was also a non-significant trend towards helplessness and depression in the intervention group. No other significant between-group differences were reported.

The fair quality RCT (Lincoln et al., 2003) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Patients were assessed for mood by the General Health Questionnaire-12 (GHQ-12). No significant between-group differences were found at 4 months or 9 months post-randomization.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs and one fairquality RCTthat family support interventions (e.g. Family Support Officers, Family Care Workers) are not more effective than usual care in improving patients’ emotional wellbeing the acute care period.

Note: One high quality RCT found significantly better outcomes only for social adjustment in favour of the control group.

Health status and quality of life - Carers
Effective
1B

One high quality RCT (Mant et al., 2000 – and a follow-up study Mant et al., 2005 ) examined the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on health status and quality of life in carers of patients with acute stroke. This high quality RCT randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ quality of life was assessed by the Dartmouth Co-op Charts and the Medical Outcomes Study Short Form (SF-36). At 6 months post-stroke there were significant between-group differences in carers’ quality of life (Dartmouth Co-op Charts), and energy/vitality, mental health, pain, physical function and general health perception (SF-36) in favour of the intervention group compared to the control group. No other significant between-group differences were found.

In a follow-up (Mant et al., 2005) to the above study, only a significant between-group difference in carers’ energy/vitality (SF-36) remained at 12 months post-stroke.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that family support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are more effective than usual care in improving patients’ health status and quality of life in the acute care period. At 12 months post-stroke, the group receiving family support had greater energy/vitality; all other outcomes were similar between groups.

Health status and quality of life - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 2000 – and a follow-up study Mant et al., 2005 – Forster & Young, 1996) examined the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on health status and quality of life in patients with acute stroke.

The first high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Patients’ quality of life was assessed by the Dartmouth Co-op Charts. No significant between-group differences were reported at 6 months post-stroke.

In a follow-up (Mant et al., 2005) to the above study, no significant between-group differences in patients’ quality of life (as measured by the Dartmouth Co-op Charts) were found at 12 months post-stroke.

The second high quality RCT (Forster & Young, 1996) randomized patients and disability and their carers to either a treatment group that received information, advice and support from a nurse specialist, or a control group that received usual care. Perceived health was assessed by the Nottingham Health Profile. No significant between-group differences were found at 3, 6, or 12 months.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that family support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are not more effective than usual care in improving patients’ health status and quality of life in the acute care period.

Knowledge of stroke - Carers
Not effective
1B

One high quality RCT (Mant et al., 2000) and one fair quality RCT (Lincoln et al., 2003) investigated the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on knowledge of stroke among carers of patients with acute stroke.

The high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers were assessed for knowledge of stroke by a non-standardized questionnaire. There were no significant between-group differences at 6 months post-intervention.

The fair quality RCT (Lincoln et al., 2003) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ knowledge of stroke was assessed by a six-item non-standardized questionnaire. Significant between-group differences were found on four questions at 4 months and three questions at 9 months, in favour of the intervention group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that family support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are not more effective than usual care in improving carers’ knowledge of stroke in the acute care period.

Note: However, one fair quality RCT found that carers who received services from a Family Support Officer showed significant improvements in some aspects of their knowledge of stroke as compared to those who received usual care.

Knowledge of stroke - Patients
Not effective
1B

One high quality RCT (Mant et al., 2000) and one fair quality RCT (Lincoln et al., 2003) investigated the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on knowledge of stroke among patients with acute stroke.

The high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Patients’ were assessed for their knowledge of stroke by a non-standardized questionnaire. No significant between-group differences were found on the questionnaire at 6 months post-intervention.

The fair quality RCT (Lincoln et al., 2003) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Patients were assessed for their knowledge of stroke by a six-item non-standardized questionnaire. Significant between-group differences were found on five questions at 4 months and four questions at 9 months, in favour of the intervention group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that family support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are not more effective than usual care in improving patients’ knowledge of stroke in the acute care period.

Note: However, one fair quality RCT found that patients who received services from a Family Support Officer showed significant improvements in some aspects of their knowledge of stroke as compared to those who received usual care.

Satisfaction with intervention - Carers
Not effective
1A

Two high quality RCTs (Mant et al., 2000, Dennis et al., 1997) and one fair quality RCT (Lincoln et al., 2003) investigated the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on satisfaction with intervention in carers of patients with acute stroke.

The first high quality RCT (Mant et al., 2000) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Satisfaction with information and understanding of stroke was measured by a non-standardized scale developed for the study. At 6 months post-intervention carers in the intervention group demonstrated significantly greater satisfaction compared to those in the control group on one of three questions, regarding their satisfaction with their understanding of stroke.

The second high quality RCT (Dennis et al., 1997) randomized patients and their carers to either an intervention group that received FCW services or a control group that received usual care. Satisfaction with care was assessed by a 20-item questionnaire. At six months post-intervention significant between-group differences were found on six questions, in favour of the intervention group compared to the control group.

The fair quality RCT (Lincoln et al., 2003) randomized patients and their carers to either an intervention group that received FSO services or a control group that received usual care. Carers’ satisfaction with information and services was assessed by a non-standardized 8-item questionnaire. Significant between-group differences were found on three questions at 4 months and two questions at 9 months, in favour of the intervention group compared to the control group.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs and one fairquality RCTthat a family support intervention (e.g. FSO, FCW or related care worker) is not more effective than usual care in improving carers’ satisfaction in the acute care period.

Note: However, all studies found significant between-group differences in favour of family support interventions on a minority of questions regarding their satisfaction (1/3 questions, 6/20 questions and 3/8 + 2/8 questions respectively).

Satisfaction with intervention - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 2000, Dennis et al., 1997) and one fair quality RCT (Lincoln et al., 2003) investigated the effects of family support interventions (e.g. a Family Support Officer (FSO), Family Care Worker (FCW) or related care worker) on satisfaction with intervention in patients with acute stroke.

The first high quality RCT (Mant et al., 2000) randomized patients with acute stroke and their carers to either an intervention group that received FSO services or a control group that received usual care. Satisfaction with services was measured by a non-standardized scale developed for the study. There were no significant between-group differences in patients’ satisfaction at 6 months post-intervention.

The second high quality RCT (Dennis et al., 1997) randomized patients with acute stroke and their carers to either an intervention group that received FCW services or a control group that received usual care. Satisfaction with services was assessed by a 20-item patient satisfaction questionnaire. Significant between-group differences were found on three questions, in favour of the intervention group compared to the control group.

The fair quality RCT (Lincoln et al., 2003) randomized patients with acute stroke and their carers to either an intervention group that received FSO services or a control group that received usual care. Patients’ satisfaction with information and services was assessed using with a non-standardized 8-item questionnaire. Significant between-group differences were found on three questions at 4 months and two questions at 9 months, in favour of the intervention group compared to the control group.

Conclusion: There is strong evidence (level 1a) from 2 high quality RCTs and 1 fair quality RCT that family support interventions (e.g. Family Support Officer, Family Care Worker or related care worker) are not more effective than usual care in improving patients’ satisfaction in the acute care period.

Note: However, 1 high quality RCT and 1 fair quality RCT found significant between-group differences in favour of family support interventions on a minority of questions regarding patient satisfaction (3/20 and 3/8 + 2/8 questions respectively).

In-person Group Education Programs

Emotional wellbeing - Carers
Not effective
1B

One high quality RCT (Rodgers et al., 1999) investigated the effects of an education group on the emotional wellbeing of carers of patients with acute stroke. This high quality RCT randomized patients and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Carers’ emotional wellbeing was measured by the General Health Questionnaire (GHQ-30). At 6 months post-stroke no significant between-group differences were found regarding carers’ emotional wellbeing.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than usual care in improving carers’ satisfaction with information and services in the acute care period.

Emotional wellbeing - Patients
Not effective
1B

One high quality RCT (Rodgers et al., 1999) investigated the effects of an education group on the emotional wellbeing of patients with acute stroke. This high quality RCT randomized patients and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Patients’ emotional wellbeing was measured using the Hospital Anxiety and Depression Scale (HADS). At 6 months post-stroke no significant between-group differences were found with regard to patients’ emotional outcomes.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than usual care in improving patients’ emotional wellbeing in the acute care period.

Functional independence - Patients
Not effective
1B

One high quality RCT (Rodgers et al., 1999) investigated the effects of a group education program or lectures on functional independence of patients with acute stroke. This high quality RCT randomized and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Functional independence was measured by the Nottingham Extended Activities of Daily Living (NEADL) scale and the Oxford Handicap Scale (OHS). No significant between-group differences were found in patients’ functional independence at 6 months.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than usual care in improving patients’ functional independence in the acute care period.

Health status and quality of life – Carers
Not effective
1B

One high quality RCT (Rodgers et al., 1999) and two non-randomized studies (Oupra et al., 2010; Louie et al., 2006) investigated the effects of an education group on health status and quality of life of carers of patients with acute stroke.

The high quality RCT (Rodgers et al., 1999) randomized patients and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Carers’ health status and quality of life was measured using the Short Form 36 health survey (SF-36). At 6 months post-stroke no significant between-group differences were found when patients’ and carers’ results were analysed together. Analysis of carers’ results alone found significantly poorer social functioning sub-scores for carers in the intervention group compared to the control group.

A non-randomized comparative study (Oupra et al., 2010) assigned patients and their caregivers to a nurse-led Supportive Educative Learning programme (SELF) that comprised three group education sessions, a corresponding stroke information booklet and three follow-up support telephone calls over 3 months, or to a control group that received usual care. Caregivers’ quality of life was measured upon the patient’s discharge from hospital and at 3 months, using the Thai version of the General Health Questionnaire (GHQ-28). A significant between-group difference in caregivers’ quality of life was seen at both time points, in favour of the SELF group compared to the control group.

The second non-randomized pre-post study (Louie et al., 2006) investigated the effects of a stroke education group on carers’ health status and quality of life, as measured the SF-36. Patients and their carers attended two lectures with video presentations and a discussion regarding participants’ experiences. No significant change in SF-36 scores was seen post-treatment.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than usual care in improving patients’ health status and quality of life in the acute care period, and may also contribute to worse social functioning outcomes for carers. One pre-post study also found no significant improvement in carers’ quality of life following participationin a strokegroup education program.

Note: However, a pre-post study that provided carers with a group education program, stroke information booklet and follow-up support phone calls for 3 months post-discharge found that this program was more effective than usual care in improving carers’ quality of life.

Health status and quality of life – Patients
Not effective
1B

One high quality RCT (Rodgers et al., 1999) and one non-randomized study (Louie et al., 2006) investigated the effects of an education group on health status and quality of life of patients with acute stroke.

The high quality RCT (Rodgers et al., 1999) randomized patients and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Patients’ quality of life and health status was measured using the Short Form-36 (SF-36). At 6 months post-stroke no significant between-group difference in patients’ perceived health status was found.

The non-randomized pre-post study (Louie et al., 2006) investigated the effects of a stroke education group on patients’ health status and quality of life, as measured the SF-36. Patients and their carers attended two lectures with video presentations and a discussion regarding participants’ experiences. Significant improvement in patients’ mean sub-scores of the SF-36 physical functioning, role-emotional and vitality were found post-treatment, although time points were not clearly specified.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than usual care in improving patients’ health status and quality of life in the acute care period.

Note: However, one pre-post study reported improvements in some aspects of patients’ quality of life following participation in a stroke group education program.

Knowledge of stroke - Carers
Effective
1B

One high quality RCT (Rodgers et al., 1999) and one non-randomized study (Louie et al., 2006) investigated the effects of a group education program on carers’ knowledge of stroke.

The high quality RCT (Rodgers et al., 1999) randomized patients with acute stroke and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Carers’ knowledge of stroke was measured by a non-standardized scale developed for the study. At 6 months post-stroke, significant differences in knowledge of stroke were seen, in favour of the SEP group compared to the control group.

The non-randomized pre-post study (Louie et al., 2006) investigated the effects of a stroke education group on carers’ knowledge of stroke, as measured using a non-standardized test developed for the study. Patients with acute stroke and their carers attended two lectures with video presentations and a discussion regarding participants’ experiences. A significant improvement in carers’ stroke knowledge was seen at 1 week, 2 weeks and 1 month after the program when compared to baseline scores.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is more effective than usual care in improving carers’ knowledge of stroke in the acute care period. Further, one non-randomized study also found improvements in carers’ stroke knowledge following a group education program.

Knowledge of stroke - patients
Effective
1B

One high quality RCT (Rodgers et al., 1999) and one non-randomized study (Louie et al., 2006) investigated the effects of a group education program on patients’ knowledge of stroke.

The high quality RCT (Rodgers et al., 1999) randomized patients with acute stroke and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Patients’ knowledge of stroke was measured using a non-standardized scale developed for the study. At 6 months post-stroke, significant differences in knowledge of stroke were seen, in favour of the SEP group compared to the control group.

The non-randomized pre-post study (Louie et al., 2006) investigated the effects of a stroke education group on patients’ knowledge of stroke, as measured using a non-standardized test developed for the study. Patients with acute stroke and their carers attended two lectures with video presentations and a discussion regarding participants’ experiences. A significant improvement in patients’ stroke knowledge was seen at 1 week, 2 weeks and 1 month after the program when compared to baseline scores.

Conclusion: There is moderate (level 1b) evidence from one high quality RCT that a group education program is more effective than usual care in improving patients’ knowledge of stroke in the acute care period. Further, one non-randomized study also found improvements in patients’ stroke knowledge following a group education program.

Satisfaction with intervention - Carers
Not effective
1B

One high quality RCT (Rodgers et al., 1999) investigated the effects of an education group on carers’ satisfaction with information and services provided during and following hospitalisation. This high quality RCT randomized patients with acute stroke and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Carers’ satisfaction with information and services provided during and following the patient’s hospitalisation was measured using a non-standardized carer satisfaction questionnaire. At 6 months post-stroke no significant between-group differences were found regarding carers’ satisfaction with information and services provided.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than usual care in improving carers’ satisfaction with information and services in the acute care period.

Satisfaction with intervention - Patients
Effective
1B

One high quality RCT (Rodgers et al., 1999) investigated the effects of an education group on patients’ satisfaction with information and services provided during and following hospitalisation. This high quality RCT randomized patients with acute stroke and their carers to an intervention group that participated in a multidisciplinary Stroke Education Program (SEP) or to a control group that received conventional stroke rehabilitation. Patients’ satisfaction with information and services was measured using a non-standardized patient satisfaction questionnaire. At 6 months post-stroke there was a significant between-group difference in patients’ satisfaction with intervention and services, in favour of the intervention group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is more effective than usual care in improving patients’ satisfaction with information and services in the acute care period.

Written Information

Community access - Patients
Not effective
1B

One high quality RCT (Mant et al., 1998 ) investigated the impact of an information package on patients’ community access behaviours. This high quality RCT randomized patients with acute stroke and their carers to receive an 8-leaflet stroke information package or no information package. Patients’ community access behaviours were measured in terms of their contact with community services, health providers and receipt of benefits, by a non-standardized questionnaire developed for the study. No significant between-group differences in community access behaviours were seen at 6 months post-stroke.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that written information is not more effective than usual care in improving patients’ community access behaviour in the acute care period (i.e. contact with community services, health providers and benefits).

Emotional wellbeing - Carers
Not effective
1A

Two high quality RCTs (Mant et al., 1998, Smith et al., 2004) investigated the impact of an information package on carers’ emotional well-being.

The first high quality RCT (Mant et al., 1998) randomized patients with acute stroke and their carers to receive an 8-leaflet stroke information package or no information package. Carers’ emotional well-being, specifically strain associated with care-giving duties, was measured by the Carer Strain Index (CSI). At 6 months no significant between-group differences were seen for carer strain.

The second high quality RCT (Smith et al., 2004) randomized patients with acute stroke and their carers to either an intervention group that received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or to a control group that received usual care. Carers’ emotional well-being was measured by the General Health Questionnaire 28 (GHQ-28). At 3 and 6 months, no significant between-group differences were found regarding carers’ emotional wellbeing.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that written information is not more effective than usual care in improving carers’ emotional well-being in the acute care period.

Emotional wellbeing - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 1998, Smith et al., 2004) investigated the impact of written information on the emotional well-being of patients with acute stroke.

The first high quality RCT (Mant et al., 1998) randomized patients with acute stroke and their carers to receive an 8-leaflet stroke information package or no information package. Patients’ emotional well-being was measured by the Hospital Anxiety and Depression Scale (HADS). At 6 months post-stroke no significant between-group difference was seen in relation to patients’ emotional well-being.

The second high quality RCT (Smith et al., 2004) randomized patients with acute stroke and their carers to either an intervention group who received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or to a control group that received usual care. Patients’ emotional well-being was evaluated by the HADS. At 3 and 6 months post-stroke the education group demonstrated significantly less anxiety compared to the control group. However there were no significant differences in depression scores between the groups at three or six months.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that written information is not more effective than usual care in improving patients’ emotional well-being in the acute care period.

Note: However, one high quality RCT found that written information is effective in reducing anxiety in patients with acute stroke when it is provided in combination with attendance at multidisciplinary team meetings.

Functional abilities - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 1998; Smith et al., 2004) and one poor quality RCT (ain & McLellan, 1990P) investigated the impact of written information on functional abilities of patients with acute stroke.

The first high quality RCT (Mant et al., 1998) randomized patients and their carers to receive an 8-leaflet information package or no information package. Patients’ function was measured using the London Handicap Scale (LHS). No significant between-group differences were seen at 6 months post-stroke.

The second high quality RCT (Smith et al., 2004) randomized patients and their carers to either an intervention group that received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or a control group that received usual care. Functional abilities were measured by the LHS, the Barthel Index (BI) and the Frenchay Activities Index (FAI). There were no significant differences in patients’ functional abilities between groups at either 3 or 6 months.

The poor quality RCT (Pain & McLellan, 1990) assigned patients and their carers to a group that received an individualized stroke information booklet at the time of discharge or a control group that did not receive an information booklet. Patients’ functional abilities were measured using the Barthel ADL scale and the FAI. No significant between-group differences were seen at 3 months post-discharge.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs and one poorquality RCTthat written information is not more effective than usual care in improving patients’ functional abilities in the acute care period.

Knowledge of stroke - Carers
Not effective
1A

Two high quality RCTs (Mant et al., 1998, Smith et al., 2004) and one fair quality RCT (Lomer & McLellan, 1987) investigated the impact of an information package on carers’ knowledge of stroke.

The first high quality RCT (Mant et al., 1998) randomized patients with acute stroke and their carers to receive an 8-leaflet information package or no information package. Carers’ knowledge of stoke was measured using a non-standardized questionnaire developed for the study. When assessed at 6 months post-stroke, there was a significant between-group difference in 1 of 11 questions, in favour of carers in the intervention group. However, this did not remain significant once results were adjusted for age.

The second high quality RCT (Smith et al., 2004) randomized patients with acute stroke and their carers to either an intervention group that received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or to a control group that received usual care. Carers’ knowledge of stroke was measured by a non-standardized questionnaire developed for the study. Assessment at 3 and 6 months found no significant between-group differences for carers’ knowledge of stroke, however there was a trend for higher scores in the intervention group.

One fair quality RCT (Lomer & McLellan, 1987) randomized patients with acute stroke and carers to an intervention group that received a stroke information leaflet or a control group that did not receive the leaflet. Knowledge of stroke was measured by a non-standardized questionnaire. At 3 weeks post-admission no significant between-group differences were found for carers’ knowledge of stroke, the patient’s condition or help/benefits available on discharge.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs and one fairquality RCTthat written information is not more effective than usual care in improving carers’ knowledge of stroke in the acute care period.

Note: While one high quality study found a significant between-group difference for one question relating to cause of stroke in favour of the intervention group, this result did not remain significant once it was adjusted for age.

Note: A study by Rodgers et al., 1999 found that written information was less effective than group education programs in improving carers’ knowledge of stroke. This study was not reviewed as an intervention trial for written materials, as the written information provided to patients and carers (a leaflet about the stroke service and an invitation to take other leaflets on the ward) was considered part of usual care and was not considered comparable with the specifically-designed information packages reviewed in this section. See the section: Impact of Group Education Programs on Knowledge of Stroke for further information regarding the Rodgers et al. (1999) study.

Knowledge of stroke - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 1998, Smith et al., 2004) and one fair quality RCT (Lomer & McLellan, 1987) investigated the impact of an information package on patients’ knowledge of stroke.

The first high quality RCT (Mant et al., 1998) randomized patients with acute stroke and their carers to receive an 8-leaflet information package or no information package. Patients’ knowledge of stroke was measured using a non-standardized questionnaire developed for the study. At 6 months post-stroke, there was a significant between-group difference in 1 out of 11 questions, specifically related to cause of stroke, in favour of the intervention group compared to the control group.

The second high quality RCT (Smith et al., 2004) randomized patients with acute stroke and their carers to either an intervention group that received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or to a control group that received usual care. Patients’ knowledge of stroke was measured by a non-standardized questionnaire developed for the study. No significant between-group differences regarding patients’ knowledge of stroke were found at either 3 or 6 months.

One fair quality RCT (Lomer & McLellan, 1987) randomized patients with acute stroke and their carers to an intervention group that received a stroke information leaflet or a control group that did not receive the leaflet. Patients’ knowledge of stroke was measured by a non-standardized questionnaire. At 3 weeks post-admission a significant between-group difference was found for patients’ knowledge of stroke and the nature of their own impairment/disability, in favour of the group that received the information leaflet. There was no between-group difference in patients’ knowledge of help/benefits available on discharge.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that written information is not more effective than usual care in improving patients’ knowledge of strokein the acute care period.

Note: However, one high quality study found a significant between-group difference for one question relating to cause of stroke, in favour of the intervention group. Further, one fair quality RCT found that written information was more effective than no information in improving patients’ knowledge of stroke and knowledge of their own condition.

Note: A study by Rodgers et al. (1999) found that written information was less effective than group education programs in improving patients’ knowledge of stroke. This study was not reviewed as an intervention trial for written materials, as the written information provided to patients and carers (a leaflet about the stroke service and an invitation to take other leaflets on the ward) was considered part of usual care and was not considered comparable with the specifically-designed information packages reviewed in this section. See the section: Impact of Group Education Programs on Knowledge of Stroke for further information regarding the Rodgers et al. (1999) study.

Quality of life - Carers
Effective
1B

One high quality RCT (Mant et al., 1998) investigated the impact of an information package on quality of life of carers of patients with acute stroke. This high quality RCT randomized patients with acute stroke and their carers to receive an 8-leaflet stroke information package or no information package. Carers’ quality of life was measured using the Medical Outcomes Short Form 36 (SF-36). At 6 months post-stroke a significant between-group difference was found in one dimension of quality of life (SF-36 General Mental Health), in favour of carers in the intervention group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that written information may be more effective than usual care in improving carers’ quality of life in the acute care period.

Note: Significant between-group differences were found for only one dimension of the SF-36 (mental health).

Quality of life - Patients
Not effective
1B

One high quality RCT (Mant et al., 1998) investigated the impact of an information package on quality of life of patients with acute stroke. This high quality RCT randomized patients and their carers to receive an 8-leaflet stroke information package or no information package. Patients’ quality of life was measured by the Dartmouth Coop Charts. At 6 months post-stroke no significant difference in patients’ quality of life was seen between the two groups.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that written information is not more effective than usual care in improving patients’ quality of life in the acute care period.

Satisfaction with information - Carers
Not effective
1A

Two high quality RCTs (Mant et al., 1998; Smith et al., 2004) examined the impact of an information package on satisfaction with information or services provided during and following hospitalisation among carers of patients with acute stroke.

The first high quality RCT (Mant et al., 1998) randomized patients and their carers to receive an 8-leaflet information package or no information package. Carers’ satisfaction with information received during the patient’s care was measured using a validated satisfaction questionnaire (Pound scale). No significant between-group differences were seen at 6 months post-stroke.

The second high quality RCT (Smith et al., 2004) randomized patients and their carers to either an intervention group that received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or to a control group that received usual care. Carers’ satisfaction with services was measured using a modified version of a validated satisfaction questionnaire (Pound scale). No significant between-group differences were found at 3 months. At 6 months there was a significant difference in satisfaction on 2 of 13 questions, in favour of the intervention group compared to the control group. These questions related to amount of information received regarding financial benefits available to the patient/carer, and amount of contact with the hospital post-discharge.

Conclusion: There is strong evidence (>level 1a>) from two >high> quality RCTs that written information is not more effective than usual care in improving carers’ satisfaction with information or services in the acute care period.

Note: One high quality RCR found a significant between-group difference on carers’ satisfaction on 2 of 13 questions at 6 months, in favour of the intervention group.

Satisfaction with information - Patients
Not effective
1A

Two high quality RCTs (Mant et al., 1998; Smith et al., 2004) examined the impact of an information package on satisfaction with information and services provided during and following hospitalisation among patients with acute stroke.

The first high quality RCT (Mant et al., 1998) randomized patients and their carers to receive an 8-leaflet information package or no information package. Patients’ satisfaction with information received during their care was measured using a validated satisfaction questionnaire (Pound scale). No significant between-group differences were seen at 6 months post-stroke.

The second high quality RCT (Smith et al., 2004) randomized patients and their carers to either an intervention group who received a specially designed stroke information booklet and could attend meetings with the multidisciplinary team, or to a control group that received usual care. Patients’ satisfaction with services was measured using a modified version of a validated satisfaction questionnaire (Pound scale). In general, no significant between-group differences were found. At 3 months a significant difference was seen on only one question that related to preparation of the home environment, in favour of the intervention group compared to the control group. No between-group differences were found on reassessment at 6 months.

Conclusion: There is strong evidence (>level 1a>) from two >high> quality RCTs that written information is not more effective than usual care in improving patients’ satisfaction with services in the acute care period.

Note: One high quality RCT found a significant between-group difference on patients’ satisfaction on 1 of 16 questions at 3 months (relating to preparation of the home environment), in favour of the intervention group, but this significant difference was not found by 6-month follow-up.

Family Intervention Based on Individualized Cognitive Assessment

Emotional wellbeing - carers
Not effective
1B

One high quality RCT (McKinney et al., 2002) examined the effects of cognitive assessment with recommendations for rehabilitation on the emotional wellbeing of carers of patients with acute stroke. This high quality RCT randomised patients and their carers to an intervention group that received specific recommendations for the patient based on the results of a series of cognitive assessments, or a control group that received usual care. Carers’ psychological distress was measured by the General Health Questionnaire-28 (GHQ-28) and carer strain was measured by the Caregiver Strain Index (CSI). No significant between-group differences regarding carers’ psychological distress were found at 3 or 6 months post randomization, however a non-significant trend was found for reduced carer strain, in favour of the intervention group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that cognitive assessment with recommendations for rehabilitation is not more effective than usual care in improving carers’ emotional wellbeing in the acute care period.

Note: However, a trend toward improvement in carer strain was found among carers in favour of intervention group compared to the control group.

Emotional wellbeing - Patients
Not effective
1B

One high quality RCT (McKinney et al., 2002) examined the effects of cognitive assessment with recommendations for rehabilitation on the emotional wellbeing of patients with acute stroke. This high quality RCT randomized patients with acute stroke and their carers to an intervention group that received specific recommendations for the patient based on the results of a series of cognitive assessments, or a control group that received usual care. Patients’ psychological distress was measured by the General Health Questionnaire-28 (GHQ-28). No significant between-group differences were found for psychological distress at 3 or 6 months post-randomization.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that cognitive assessment with recommendations for rehabilitation is not more effective than usual care in improving patients’ emotional wellbeing in the acute care period.

Functional abilities - Patients
Not effective
1B

One high quality RCT (McKinney et al., 2002) examined the effects of cognitive assessment with recommendations for rehabilitation on the functional abilities of patients with acute stroke. This high quality RCT randomized patients with acute stroke and their carers to an intervention group that received specific recommendations for the patient based on the results of a series of cognitive assessments, or a control group that received usual care. Patients’ functional abilities were measured by the Barthel Index, Extended Activities of Daily Living and the London Handicap Scale. No significant between-group differences were found on any measure at 3 or 6 months post-randomization.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that cognitive assessment with recommendations for rehabilitation is not more effective than usual care in improving patients’ functional abilities in the acute care period.

Perceived cognitive ability - Patients
Not effective
1B

One high quality RCT (McKinney et al., 2002) examined the effects of cognitive assessment with recommendations for rehabilitation on the perceived cognitive ability of patients with acute stroke. This high quality RCT randomized patients with acute stroke and their carers to an intervention group that received specific recommendations for the patient based on the results of a series of cognitive assessments, or a control group that received usual care. Patients’ perceived cognitive ability was measured by the Cognitive Failures Questionnaire. No significant between-group differences in perceived cognitive ability were found for patients at 3 or 6 months post randomization.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that cognitive assessment with recommendations for rehabilitation is not more effective than usual care in improving perceived cognitive ability in patients with acute stroke.

Satisfaction with care - patients
Not effective
1B

One high quality RCT (McKinney et al., 2002) examined the effects of cognitive assessment with recommendations for rehabilitation on satisfaction with care in patients with acute stroke. This high quality RCT randomized patients with acute stroke and their carers to an intervention group that received specific recommendations for the patient based on the results of a series of cognitive assessments, or a control group that received usual care. Patients’ satisfaction with care was measured by a visual analogue scale. No significant between-group differences in patients’ level of satisfaction were found at 3 or 6 months.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that cognitive assessment with recommendations for rehabilitation is not more effective than usual care in improving patients’ satisfaction with strokecare.

Integrated Care Pathways

Emotional wellbeing - Carers
Not effective
2A

One fair quality RCT (Sulch et al., 2002) examined the effectiveness of integrated care pathways on emotional wellbeing of carers of patients with acute stroke. This fair quality RCT randomized patients and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Carers’ emotional wellbeing was measured by the Caregiver Strain Index (CSI). At 6 months post-stroke the ICP group showed a non-significant trend toward higher caregiver strain as compared to the MDT group.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that integrated care pathways are not more effective than conventional multidisciplinary team care in improving carers’ emotional wellbeing in the acute care period.

Note: Furthermore, a non-significant trend toward higher caregiver strain was observed in the ICP intervention group compared to the conventional multidisciplinary team care group.

Emotional wellbeing - Patients
Not effective
1B

One high quality RCT (Sulch et al., 2000) examined the effectiveness of integrated care pathways(ICPs) on emotional wellbeing of patients with acute stroke. This high quality RCT randomized patients and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Patients’ emotional wellbeing was measured by the Hospital Anxiety and Depression Scale at 4, 12 and 26 weeks post-stroke. No significant between-group difference in patients’ emotional wellbeing was seen at any time point.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that integrated care pathways are not more effective than conventional multidisciplinary team care in improving patients’ emotional wellbeing in the acute care period.

Functional status - Patients
Not effective
1B

One high quality RCT (Sulch et al., 2000) and two fair air quality RCTs (Hamrin & Lindmark, 1990; Falconer et al., 1993) have explored the use of integrated care pathways on functional status in patients with stroke.

The high quality study (Sulch et al., 2000) randomized patients and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Patients’ functional improvement was measured by the Barthel Index at 1 week, 4 weeks, 12 weeks and 26 weeks post-stroke, and the modified Rankin Scale at 12 and 26 weeks post-stroke. There were no significant between-group differences in Barthel Index or modified Rankin scores at any time point. However, the MDT group demonstrated a significantly greater improvement in BI scores from 4 to 12 weeks post-stroke than the ICP group.

The first fair quality RCT (Hamrin & Lindmark, 1990) assigned patients to management by a systemized care procedure with written care plans, acute stroke care guidelines, ward conferences and information meetings for relatives, or management according to conventional care. Patients’ functional outcomes were measured using the Activity Index, Fugl Meyer Assessment, Katz Index of ADL, and a non-standardized measure of motor capacity, mobility, balance sensation, joint motion and pain. No significant between-group differences were seen at 1 week or 3 weeks post-stroke, on discharge, 3 months or 12 months post-stroke.

The second fair quality RCT (Falconer et al., 1993) randomized patients with acute and subacute stroke to receive either interdisciplinary team care planning using the Critical Path Method (CPM), or to usual multidisciplinary care. There were no between-group differences in motor or cognitive function at discharge.

Conclusion: There is moderate evidence (level 1b) from 1 high quality RCT and 2 fair quality RCTs that integrated care pathways are not more effective than conventional care in improving patients’ functional status in the acute care period.

Note: The high quality RCT reported improved functions (according to change in Barthel Index scores) between 4 and 12 weeks post-stroke in the ICP group, but this was not maintained.

Quality of life - Patients
Not effective
1B

One high quality RCT (Sulch et al., 2000) and one fair quality RCT (Sulch et al., 2002) examined the effectiveness of integrated care pathways on quality of life in patients with acute stroke.

The high quality RCT (Sulch et al., 2000) randomized patients and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Patients’ quality of life was measured by the Euro-Qol Quality of Life at 1 week, 4 weeks, 12 weeks and 26 weeks post-stroke. At 12 weeks post-stroke a significant between-group difference was found in patients’ quality of life in favour of the MDT group compared to the ICP group. No other significant between-group differences were reported.

The fair quality RCT (Sulch et al., 2002) randomized patients and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Patients’ quality of life was measured by the Euro-QoL Visual Analogue Scale (EQ-VAS) and 5-domain questionnaire (EQ-5D) at 6 months post-stroke. There was a significant difference in self care scores, (EQ-5D self-care domain), in favour of the ICP group compared to the MDT group. However, significant between-group differences were found in quality of life (overall EQ-VAS and Euro-Qol Quality of Life scores) and social function (EQ-5D social functioning domain), in favour of the MDT group compared to the ICP group. The other domains of the EQ-5D (mobility, pain, and psychological functioning) did not show significant between-group differences.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT and one fairquality RCTthat integrated care pathways are not more effective than conventional multidisciplinary team care in improving most aspects of patients’ quality of life in the acute care period.

Note: However, integrated care pathways are more effective than conventional multidisciplinary team care in improving patients’ self-care abilities.

Satisfaction with care - Carers
Not effective
2A

One fair quality RCT (Sulch et al., 2002) examined the effectiveness of integrated care pathways on satisfaction with care among carers of patients with acute stroke. This fair quality RCT randomized patients with acute stroke and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Carers’ satisfaction with recovery, quantity of therapy, information received, and discharge planning was assessed by a Satisfaction with Care Questionnaire that was modified for the study. At 6 months post-stroke no significant between-group differences were found for carers’ satisfaction with care.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that integrated care pathways are not more effective than conventional multidisciplinary team care in improving carers’ satisfaction with care in the acute care period.

Satisfaction with care - Patients
Not effective
2A

Two fair quality RCTs (Falconer et al., 1993; Sulch et al., 2002) have examined the effectiveness of integrated care pathways on satisfaction with care among patients with stroke.

The first fair quality RCT (Falconer et al., 1993) randomized patients with acute/subacute stroke to receive either interdisciplinary team care planning using the Critical Path Method (CPM), or to usual multidisciplinary care. Patient satisfaction was measured using a non-standardized questionnaire, although 58% of questionnaires were completed by a family member due to patients’ comprehensive difficulties. General satisfaction scores at discharge were significantly lower in the CPM group compared to the control group.

The second fair quality RCT (Sulch et al., 2002) randomized patients with acute stroke and their carers to receive either integrated care pathways (ICP) or conventional multidisciplinary team care (MDT). Patients’ satisfaction with recovery, quantity of therapy, information received, and discharge planning were measured by a Satisfaction with Care Questionnaire that was modified for the study. No significant between-group differences were found for patients’ satisfaction with care at 6 months post-stroke.

Conclusion: There is limited evidence (level 2a) from two fair quality RCTs that integrated care pathways are not more effective than conventional multidisciplinary team care in improving patients’ satisfaction with care in the acute care period.

Intensive Discharge Transition Support

Emotional wellbeing - Carers
Not effective
2B

One quasi-experimental study (Gräsel et al., 2005) investigated the effects of intensive discharge transition support on emotional wellbeing of carers of patients with acute stroke. This quasi-experimental study allocated patients and their carers to an intervention group that received intensified transition consisting of education and support for patients and carers prior to and following discharge (ST+IT), or a control group that received standard transition (ST). Carers’ emotional wellbeing was measured by the Zerssen Depression Scale (D-S) and the Burden Scale for Family Caregivers (BSFC). No significant between-group differences were found for carers’ emotional wellbeing at 4 weeks or 6 months post-discharge.

Conclusion: There is limited evidence (level 2b) from one quasi-experimental study that intensive discharge transition support is not more effective than usual care in improving carers’ emotional wellbeing in the acute care period.

Functional abilities - Patients
Not effective
2B

One poor quality RCT (Shyu et al., 2009) and one quasi-experimental study (Gräsel et al., 2005) investigated the effects of intensive discharge transition support on functional abilities in patients with acute stroke.

The poor quality study (Shyu et al., 2009) randomised patients and their carers to receive a caregiver-oriented discharge preparation programme that comprised health education, referrals and problem-solving support, or routine discharge services. Patients’ self-care skills were measured by the Chinese Barthel Index at 1, 3, 6 and 12 months post-discharge. There was no significant between-group difference in patients’ self-care skills at any time point.

The quasi-experimental study (Gräsel et al., 2005) allocated patients and their carers to an intervention group that received intensified transition consisting of education and support for patients and carers prior to and following discharge (ST+IT), or a control group that received standard transition (ST). Patients’ functional abilities were measured by the Barthel Index and the Functional Independence Measure (FIM), Ashworth Spasticity Scale, Frenchay Arm Test and Timed Up and Go Test (TUG). No significant between-group differences were found on any outcome measures at 4 weeks or 6 months post-discharge.

Conclusion: There is limited evidence (level 2b) from one poor quality RCT and one quasi-experimental study that intensive discharge transition support is not more effective than usual care in improving patients’ functional abilities in the acute care period.

Health status - Carers
Not effective
2B

One quasi-experimental study (Gräsel et al., 2005) investigated the effects of intensive discharge transition support on health status of carers of patients with acute stroke. This quasi-experimental study allocated patients and their carers to an intervention group that received intensified transition consisting of education and support for patients and carers prior to and following discharge (ST+IT), or a control group that received standard transition (ST). Carers’ health status was measured by somatic complaints using the Giessen Symptom List. No significant between-group differences were found for carers’ health status at 4 weeks or 6 months post-discharge.

Conclusion: There is limited evidence (level 2b) from one quasi-experimental study that intensive discharge transition support is not more effective than usual care in improving carers’ health status in the acute care period.

Health status - Patients
Effective
2B

One poor quality RCT (Shyu et al., 2009) and one quasi-experimental study (Gräsel et al., 2005 – follow up study Gräsel et al., 2006) investigated the effects of intensive discharge transition support on health status of patients with acute stroke.

The poor quality study (Shyu et al., 2009) randomised patients with acute stroke and their carers to receive a caregiver-oriented discharge preparation programme that comprised health education, referrals and problem-solving support, or routine discharge services. Patient service use was measured at 1, 3, 6 and 12 months post-discharge according to length of hospital stay, hospital readmissions and institutionalisations. Patients in the intervention group demonstrated significantly less institutionalisation than patients in the control group 6 to 12 months post-discharge. There were no significant between-group differences in length of hospital stay or hospital readmissions at any time point.

The quasi-experimental study (Gräsel et al., 2005) allocated patients with acute stroke and their carers to an intervention group that received intensified transition consisting of education and support for patients and carers prior to and following discharge (ST+IT), or a control group that received standard transition (ST). Patients’ health status was measured at 4 weeks and 6 months post-discharge by the number of physician visits and newly appearing illnesses documented for each patient. There was a significant between-group difference in the number of physician visits in favour of the intervention group compared to the control group at 6 months post-discharge (these differences were not present at four weeks post-discharge). Patients in the control group showed significantly more new illnesses than those in the intervention group at 4 weeks post-discharge, but this difference was not significant at 6 months.

In a follow-up study (Gräsel et al., 2006), patients were contacted by telephone on average 31 months after discharge from hospital to determine whether the patient was (a) alive; and (b) living at home or in a nursing home. There was a significant difference between groups in the number of patients who were alive and living at home, in favour of the intervention group compared to the control group (p=0.036).

Conclusion: There is limited evidence (level 2b) from one poor quality RCT and one quasi-experimental study that intensive discharge transition support is more effective than usual care in reducing patients’ rate of illness and institutionalization in the acute care period.

Quality of care - Carers
Effective
2B

One poor quality RCT (Shyu et al., 2009) investigated the effects of intensive discharge transition support on quality of care of carers of patients with acute stroke. This poor quality study randomised patients and their carers to receive a caregiver-oriented discharge preparation programme that comprised health education, referrals and problem-solving support, or routine discharge services. Carers’ quality of care was measured by the Family Caregiving Consequence Inventory (FCCI) – frail elder outcome subscale. There was a significant between-group difference in quality of care at 6 months, in favour of the intervention group compared to the control group, and caregivers in the intervention group provided significantly better overall quality of care in the first 12 months than those in the control group.

Conclusion: There is limited evidence (level 2b) from one poor quality RCT that intensive discharge transition support is more effective than usual care in improving carers’ quality of care in the acute care period.

Quality of life - Carers
Not effective
2B

One poor quality RCT (Shyu et al. 2009) investigated the effects of intensive discharge transition support on quality of life of carers of patients with acute stroke. This poor quality study randomised patients with acute stroke and their carers to receive a caregiver-oriented discharge preparation programme that comprised health education, referrals and problem-solving support, or routine discharge services. Carers’ quality of life was measured by the Medical Outcomes Study Short Form (SF-36) at 1, 3, 6 and 12 months post-discharge. At 3 months carers in the intervention group scored significantly worse on the SF-36 social functioning subtest than carers in the control group. No other between-group differences were seen at any time point.

Conclusion: There is limited evidence (level 2b) from one poor quality RCT that discharge transition support is not more effective than usual care in improving carers’ health-related quality of life in the acute care period. In fact, carers in the intervention group demonstrated significantly lower social functioning than those in the control group at 3 months post-discharge.

Note: The authors of the poor quality study commented that the discharge preparation programme is likely to have increased carers’ awareness of the demands of caregiving, thus contributing to a consequent reduction in social activities. The study also found lower rates of institutionalization at 6 to 12 months post-discharge in the intervention group than the control group (see section below regarding impact on health status), which may have increased burden among carers in the intervention group and contributed to poorer social functioning.

Quality of life - patients
Not effective
2b

One poor quality RCT (hyu et al. 2009S) and one quasi-experimental study (Gräsel et al., 2005) investigated the effects of intensive discharge transition support on quality of life of patients with acute stroke.

The poor quality study (Shyu et al., 2009) randomised patients and their carers to receive a caregiver-oriented discharge preparation programme that comprised health education, referrals and problem-solving support, or routine discharge services. Patients’ health related quality of life was measured by the Medical Outcomes Study Short Form (SF-36) at 1, 3, 6 and 12 months post-discharge. There was no significant between-group difference in patients’ health related quality of life at any time point.

The quasi-experimental study (Gräsel et al., 2005) allocated patients and their carers to an intervention group that received intensified transition consisting of education and support for patients and carers prior to and following discharge (ST+IT), or a control group that received standard transition (ST). Patients’ quality of life was measured by the SF-36. No significant between-group differences were found at 4 weeks or 6 months post-discharge.

Conclusion: There is limited evidence (level 2b) from one poor quality RCT and one quasi-experimental study that intensive discharge transition support is not more effective than usual care in improving patients’ health-related quality of life in the acute care period.

References

Dennis, M., O’Rourke, S., Slattery, J., Staniforth, T., & Warlow, C. (1997). Evaluation of a stroke family care worker: Results of a randomized controlled trial. British Medical Journal, 314(7087), 1071-1076.

Forster, A., & Young, J. (1996). Specialist nurse support for patients with stroke in the community: A randomised controlled trial. British Medical Journal, 312 (7047), 1642-1646.

Falconer, J.A., Roth, E.J., Sutin, J.A., Strasser, D.C., & Chang, R.W. (1993). The critical path method in stroke rehabilitation: lessons from an experiment in cost containment and outcome improvement. Qualitative Review Bulletin, 19, 8-16.

Gräsel, E., Biehler, J., Schmidt, R., & Schupp, W. (2005). Intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Controlled clinical trial with follow-up assessment six months after discharge. Clinical Rehabilitation, 19, 725-736.

Gräsel, E., Schmidt, R., Biehler, J., & Schupp, W. (2006). Long-term effects of the intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Clinical Rehabilitation, 20, 577-83.

Hamrin, E.K. & Lindmark, B. (1990). The effect of systematic care planning after acute stroke in general hospital medical wards. Journal of Advanced Nursing, 15, 1146-1153.

Lincoln, N.B., Francis, V.M., Lilley, S.A., Sharma, J.C., & Summerfield, M. (2003). Evaluation of a Stroke Family Support Organiser: A randomized controlled trial. Stroke, 34, 116-121.

Lomer, M. & McLellan, D.L. (1987). Informing hospital patients and their relatives about stroke. Clinical Rehabilitation, 1, 33-7.

Louie, S.W.S, Liu, P.K.K., & Man, D.W.K. (2006). The effectiveness of a stroke education group on persons with stroke and their caregivers. International Journal of Rehabilitation Research, 29, 123-129.

Mant, J., Carter, J., Wade, D.T., & Winner, S. (1998). The impact of an information pack on patients with stroke and their carers: A randomized controlled trial. Clinical Rehabilitation, 12, 465-76.

Mant, J., Carter, J., Wade, D.T., & Winner, S. (2000). Family support for stroke: A randomised controlled trial. Lancet, 356, 808-813.

Mant, J., Winner, S., Roche, J., & Wade, D.T. (2005). Family support for stroke: One year follow up of a randomised controlled trial. Journal of Neurology, Neurosurgery and Psychiatry, 76, 1006-8. doi: 10.1136/jnnp.2004.048991

McKinney, M., Blake, H., Treece, K.A., Lincoln, N.B., Playfordand, E.D., & Gladman, J.R.F. (2002). Evaluation of cognitive assessment in stroke rehabilitation. Clinical Rehabilitation, 16, 129-136.

Oupra, R., Griffiths, R., Pryor, J., & Mott, S. (2010). Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand. Health and Social Care in the Community, 18(1), 10-20.

Pain, H.S.B. & McLellan, D.L. (1990). The use of individualized booklets after a stroke. Clinical Rehabilitation, 4, 265-272.

Rodgers, H., Atkinson, C., Bond, S., Suddes, M., Dobson, R., & Curless, R. (1999). Randomized controlled trial of a comprehensive stroke education program for patient and caregivers. Stroke, 30, 2585-2591.

Shyu, Y-I.L., Kuo, L-M., Chen, M-C., & Chen, S-T. (2009). A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan. Journal of Clinical Nursing, 19, 1675-85. doi: 10.1111/j.1365-2702.2009.03124.x.

Smith, J., Forster, A., & Young, J. (2004). A randomized trial to evaluate an education programme for patients and carers after stroke. Clinical Rehabilitation, 18, 726-736.

Sulch, D., Perez, I., Melbourn, A., & Kalra, L. (2000). Randomized controlled trial of integrated (managed) care pathway for stroke rehabilitation. Stroke, 31, 1929-34.
Sulch, D. & Kalra, L. (2000). Integrated care pathways in stroke management. Age and Ageing, 29, 349-52.

Sulch, D., Melbourn, A., Perez, I., & Kalra, L. (2002). Integrated care pathways and quality of life on a stroke rehabilitation unit. Stroke, 33, 1600-1604.

Family Support – Subacute / Chronic

Evidence Reviewed as of before: 25-08-2011
Author(s)*: Dr. Nicol Korner-Bitensky (PhD); Annabel McDermott (OT)
Table of contents

Introduction

Stroke can impact substantially on many aspects of life for the person who experiences a stroke, as well as his/her family. This module provides information on the value of various interventions such as education about stroke, counselling, and specific training regarding how to manage after a stroke.

Clinician Information

Note: When reviewing the findings, it is important to note that they are always made according to randomized clinical trial (RCT) criteria – specifically as compared to a control group. To clarify, if a treatment is “effective” it implies that it is more effective than the control treatment to which it was compared. Non-randomized studies are no longer included when there is sufficient research to indicate strong evidence (level 1a) for an outcome.

Numerous studies have explored aspects of family-directed intervention in the acute, subacute and chronic phases of stroke rehabilitation. For the purpose of these modules, research that investigates interventions during the acute phase of stroke recovery has been examined separately to those that investigate interventions used during the subacute and chronic phases of stroke recovery.

Studies have examined the effects of approaches such as group education programs, counseling and education programs, carer training programs, web education programs and telephone support services. Outcomes that are typically evaluated in both the patient with stroke and their carer include emotional well-being, stroke-related knowledge, satisfaction with information/intervention, activity and participation, quality of life and health status.

In the subacute and chronic phases of stroke recovery, patients’ emotional wellbeing and adjustment to stroke improved with combined counselling and education programs, while carer emotional wellbeing benefited from telephone support programs only. Carer strain and burden, and patients’ and carers’ mood and quality of life improved following carer training programs. Carers’ knowledge of stroke improved following several interventions including home visit programs, group education programs and combined counselling and education programs, while carers’ problem solving skills were found to benefit from telephone interventions. No studies reported on patient knowledge of stroke. Patient function and recovery improved following several interventions including carer training programs and combined counselling and education programs. Family function was also found to benefit from combined education and counselling programs. Interestingly, patients’ use of health care services improved following web education programs. Elements such as carers’ perceived social support, patients’ and carers’ satisfaction with intervention, patients’ and carers’ use of social resources, patients’ and carers’ health status and ADLs, patients’ mortality/institutionalisation were not found to benefit from any particular intervention.

Outcomes

Carer Training Programs

Activities of Daily Living (ADLs) - Patients
Effective
1B

One high quality RCT (Kalra et al., 2004) examined the effects of carer training program on activities of daily living (ADLs) in patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. ADLs were measured by the Barthel Index at 3 and 12 months post-stroke. A significant between-group difference in ADLs was seen at 3 months, in favour of the carer training group compared to the control group, however this was not maintained at 12 months.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is more effective than conventional care in improving ADLs of patients with subacute or chronic stroke in the short term.

Activities of Daily Living (IADLs) - Patients
Not effective
1B

One high quality RCT (Kalra et al., 2004) examined the effects of carer training program on instrumental activities of daily living (IADLs) in patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. IADLs were measured by the Frenchay Activities Index at 12 months post-stroke. No significant between-group differences were found.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is not more effective than conventional care in improving IADLs in patients with subacute or chronic stroke.

Burden - Carers
Effective
1B

One high quality RCT (Kalra et al., 2004) has investigated the effect of a carer training program on burden of carers of patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. Carer burden was measured by the Caregiving Burden Scale at 3 and 12 months post-stroke. A significant between-group difference in carer burden was found at both time points, in favour of the carer training group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is more effective than conventional care in reducing burden in carers of patients with subacute or chronic stroke.

Functional Independence - Patients
Not effective
1B

One high quality RCT (Kalra et al., 2004) has investigated the effect of a carer training program on functional independence of patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. Functional independence was measured by the Modified Rankin Scale at 3 and 12 months post-stroke. No significant between-group differences in functional independence were found at either time point.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is not more effective than conventional care in improving functional independence in patients with subacute or chronic stroke.

Instrumental activities of daily living (IADLs) – Carers
Not effective
1B

One high quality RCT (Kalra et al., 2004) examined the effects of carer training program on instrumental activities of daily living (IADLs) in carers of patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. IADLs were measured by the Frenchay Activities Index at 12 months post-stroke. No significant between-group differences were found.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is not more effective than conventional care in improving instrumental activities of daily living in carers of patients with subacute or chronic stroke.

Mood - Carers
Effective
1B

One high quality RCT (Kalra et al., 2004) and one poor quality RCT (Perrin et al., 2010) have investigated the effect of a carer training program on mood of carers of patients with subacute or chronic stroke.

The high quality RCT (Kalra et al., 2004) randomized patients and their carers to either a carer training group or a control group who received conventional care. Mood was measured by the Hospital Anxiety and Depression Scale at 12 months post-stroke. A significant between-group difference was found in favour of the carer training group as compared to the control group.

The poor quality RCT (Perrin et al., 2010) randomised carers of patients to an intervention group that received a Transition Assistance Program (TAP) or a control group that received standard care. Carer depression was measured by the Center for Epidemiologic Studies Depression Scale (CESD-10). A significant between-group difference in depression was found at 3 months post-discharge, in favour of the TAP group compared to the control group.

Note: The significant between-group difference was only found when baseline differences in depression were controlled and the significance level was adjusted to 0.10.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT and one poorquality RCT that a carer training program is more effective than conventional care in improving mood of carers of patients with subacute or chronic stroke.

Mood - Patients
Effective
1B

One high quality RCT (Kalra et al., 2004) has investigated the effect of a carer training program on mood of patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. Mood was measured by the Hospital Anxiety and Depression Scale at 12 months post-stroke. A significant between-group difference was found in favour of the carer training group as compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one highquality RCTthat a carer training program is more effective than conventional care in improving mood of patients with subacute or chronic stroke.

Mortality and Institutionalisation - Patients
Not effective
1B

One high quality RCT (Kalra et al., 2004) has investigated the effect of a carer training program on mortality and institutionalisation in patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. Mortality and institutionalisation rates were documented at 3 and 12 months post-stroke. No significant between-group differences were found at either time point.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is not more effective than conventional care in minimising mortality and institutionalisation in patients with subacute or chronic stroke.

Quality of life - Carers
Effective
1B

One high quality RCT (Kalra et al., 2004) has investigated the effect of a carer training program on quality of life of carers of patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. Quality of life was measured by the EuroQOL visual analogue scale at 3 and 12 months post-stroke. A significant between-group difference in quality of life was found at both time points, in favour of the carer training group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is more effective than conventional care in improving the quality of life of carers of patients with subacute or chronic stroke.

Quality of life - Patients
Effective
1B

One high quality RCT (Kalra et al., 2004) has investigated the effect of a carer training program on quality of life of patients with subacute or chronic stroke. This high quality RCT randomized patients and their carers to either a carer training group or a control group who received conventional care. Quality of life was measured by the EuroQOL visual analogue scale at 3 and 12 months post-stroke. A significant between-group difference in quality of life was found at both time points, in favour of the carer training group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a carer training program is more effective than conventional care in improving quality of life of patients with subacute or chronic stroke.

Strain - Carers
Effective
2B

One poor quality RCT (Perrin et al., 2010) has investigated the effect of a carer training program on strain in carers of patients with subacute or chronic stroke. This poor quality RCT randomised participants to an intervention group that received a carer Transition Assistance Program (TAP) or a control group that received standard care. Carer strain was measured by the Caregiver Strain Index. A significant between-group difference in carer strain was reported at 1 month and 3 months post-discharge in favour of the TAP group. Carers from the control group demonstrated a significant increase in carer strain from 1 to 3 months post-discharge, while carers from the TAP group demonstrated reduced strain over this time.

Note: Although the authors reported a significant between-group difference in carer strain at 1 and 3 months, statistical data were not provided.

Conclusion: There is limited evidence (level 2b) from one poor quality RCT that a carer training program is more effective than conventional care in reducing strain in carers of patients with subacute or chronic stroke.

Combined Counselling and Education Programs

Activities of daily living - Patients
Effective
1B

One high quality RCT (Clark et al., 2003) examined the effects of counselling and written information on activities of daily living (ADLs) of patients with subacute stroke. This high quality RCT randomised patients and their spouses to receive an information package and counselling or no intervention. ADLs of daily living were measured by the Barthel Index and the Adelaide Activities Profile (AAP). At 6 months follow-up significant between-group differences were seen in favour of the intervention group compared to the control group. Results from the AAP showed that the intervention group demonstrated greater participation in domestic chores, household maintenance and social activities, but not service to others.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a combined counselling and education program is more effective than regular care in improving activities of daily living in patients with subacute stroke.

Emotional wellbeing - Patients
Effective
1B

One high quality RCT (Clark et al., 2003) examined the effects of counselling and written information on emotional wellbeing of patients with subacute stroke. This high quality RCT randomised patients and their spouses to receive an information package and counselling or no intervention. Anxiety was assessed using the Hospital Anxiety and Depression Scale and depression was assessed using the short form of the Geriatric Depression Scale. At 6 month follow-up there was no significant between-group difference in depression, however patients in the intervention group were significantly less anxious as compared to those in the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a combined counselling and education program is more effective than regular care in reducing anxiety but not depression in patients with subacute stroke.

Family functioning - Carers
Effective
1B

One high quality RCT (Clark et al., 2003) and one fair quality RCT (Evans et al., 1988) investigated the effectiveness of counselling and education in improving family functioning for carers of patients with stroke.

The high quality RCT (Clark et al., 2003) randomised patients with subacute stroke and their spouses to receive an information package and counselling or no intervention. Family functioning amongst carers was measured using the McMaster Family Assessment Device. At 6 months follow-up, there was a significant between-group difference in family functioning, in favour of patients in the intervention group compared to those in the control group.

The fair quality RCT (Evans et al., 1988) randomized carers of patients with stroke (time since stroke not specified) to an education group (EG), a counselling + education group (CEG), or a control group (no education or counselling). Family function in carers was measured using the McMaster Family Assessment Device. At 6 months and 1 year post-stroke, significant between-group differences were seen in favour of both the EG and CEG compared to the control group for some aspects of family function (problem-solving, communication, and global family function subtests).

Conclusion: There is moderate evidence (level 1b) from one high quality RCT and one fair quality RCT that a combined counselling and education program is more effective than regular care in improving family function in carers of patients with stroke.

Family functioning - Patients
Effective
1b

One high quality RCT (Clark et al., 2003) examined the effects of counselling and written information on family functioning for patients with subacute stroke. This high quality RCT randomised patients and their spouses to receive an information package and counselling or no intervention. Family function in patients was measured with the McMaster Family Assessment Device (FAD). At 6 months follow-up, significant between-group differences in family functioning were seen in favour of the intervention group compared to the control group.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a combined counselling and education program is more effective than regular care in improving family functioning of patients with subacute stroke.

Health status and quality of life – Carers
Not effective
1B

One high quality RCT (Clark et al., 2003) investigated the effects of counselling and written information on health status and quality of life of spouses of patients with subacute stroke. The high quality RCT randomised patients and their spouses to receive an information package and counselling or no intervention. Carers’ health status and quality of life was measured by the Short Form-36 Health Survey (SF-36). At 6 months follow-up, there were no significant between-group differences in carers’ physical or mental health scores.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a combined counselling and education program is not more effective than regular care in improving quality of life and health status of carers for patients with subacute stroke.

Health status and quality of life – Patients
Not effective
1B

One high quality RCT (Clark et al., 2003) investigated the effects of counselling and written information on health status and quality of life of patients with subacute stroke. The high quality RCT randomised patients and their spouses to receive an information package and counselling or no intervention. Health status and quality of life and was measured using the Short Form-36 Health Survey (SF-36). At 6 months follow-up there were no significant between-group differences on SF-36 subscale scores of pain, physical health, or mental health.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a combined counselling and education program is not more effective than regular care in improving health-related quality of life in patients with subacute stroke.

Knowledge of stroke - Carers
Effective
2A

One fair quality RCT (Evans et al., 1988) investigated the effects of counselling and education on knowledge of stroke in carers of patients with stroke. This high quality RCT randomised carers of patients with stroke (time since stroke not specified) to an education group (EG), a counselling + education group (CEG), or a control group (no education or counselling). Carers’ knowledge of stroke was measured using the Stroke Care Information Test. At 6 months and 1 year after stroke, significant between-group differences were seen for carer knowledge of stroke in favour of both CEG and EG compared to the control group.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a combined counselling and education program is more effective than regular care in improving knowledge of stroke among carers of patients with subacute or chronic stroke.

Mastery - Patients
Not effective
1B

One high quality RCT (Clark et al., 2003) examined the effects of counselling and written information on mastery for patients with subacute stroke. This high quality RCT randomised patients with and their spouses to receive an information package and counselling or no intervention. Patients were assessed with the Mastery Scale. No significant between-group differences in patient mastery were seen at 6 months follow-up.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a combined counselling and education program is not more effective than regular care in improving sense of mastery in patients with subacute stroke.

Patient adjustment
Effective
2a

One fair quality RCT (Evans et al., 1988) investigated the effects of counselling and education on personal adjustment in patients with stroke. This high quality RCT randomised patients with stroke (time since stroke not specified) to an education group (EG), a counselling + education group (CEG), or a control group (no education or counselling). Patient adjustment was measured by the Personal Adjustment and Role Skills Scale (PARS). At 6 months and 1 year after stroke, patients’ adjustment scores were significantly better in the CEG compared to the EG and the control group.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a combined counselling and education program is more effective than education alone or regular care in improving personal adjustment of patients with subacute or chronic stroke.

Use of social resources - Carers
Not effective
2A

One fair quality RCT (Evans et al., 1988) investigated the effects of counselling and education on use of social resources in carers of patients with stroke. This high quality RCT randomised carers of patients with stroke (time since stroke not specified) to an education group (EG), a counselling + education group (CEG), or a control group (no education or counselling). Use of social resources was measured using the ESCROW Profile. No significant between-group differences were seen with regard to carers’ use of social resources at 6 months or 1 year after stroke.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a combined counselling and education program is not more effective than regular care in improving use of social resources by carers of patients with subacute or chronic stroke.

Group Education Program or Lectures

Activities of Daily Living - Patients
Not Effective
1B

One high quality RCT (Franzen-Dahlin et al., 2008) and one poor quality RCT ( Draper et al., 2007) investigated the effects of a group education program on performance of activities of daily living (ADLs) by patients with stroke.

The high quality RCT (Franzen-Dahlin et al., 2008) randomised patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures and group discussions on stroke-related topics, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. ADLs were measured using the Barthel Index. There were no significant between-group differences in patients’ functional ability at 6 or 12 months.

The poor quality RCT (Draper et al., 2007) randomised carers of patients with aphasia post-stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). ADLs were measured by the Barthel Index and instrumental activities of daily living (IADLs) were measured using the Frenchay Activities Index. No significant changes were seen within either group from baseline to post-intervention or follow-up.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than regular care in improving activities of daily living in patients with stroke.

Burden - Carers
Effective
2A

One fair quality RCT (Hartke et al., 2003) and one poor quality RCT (Draper et al., 2007) investigated the effects of a group education program on burden of carers of patients with stroke.

The fair quality RCT (Hartke et al., 2003) randomized spouses of patients with stroke (stage of stroke not specified) to either a telephone psycho-education group or a control group that received regular care. Both groups received written stress management advice. Carer burden was assessed by the Burden Interview. At 6 months follow-up a significant between-group difference was found for burden in favour of the intervention group compared to the control group.

The poor quality RCT (Draper et al., 2007) randomised carers of patients with aphasia post-stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). Carer burden was measured by the Relatives’ Stress Scale. No significant changes in carer burden were seen within either group from baseline to post-intervention or follow-up.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a group education program is more effective than regular care in reducing burden of carers of patients with stroke.

Communication - Carers
Insufficient evidence
5

One poor quality RCT (Draper et al., 2007) investigated the effects of a group education program on communication of carers of patients with stroke. This poor quality RCT randomised carers of patients with aphasia post-stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). Carer communication was measured by a non-standardised questionnaire. No significant changes in carer communication were seen within either group from baseline to post-intervention or follow-up.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is insufficient evidence (level 5) to indicate whether a group education program is more effective than regular care in improving communication of carers of patients with subacute or chronic stroke.

Emotional wellbeing - Carers
Not effective
1b

One high quality RCT (Franzen-Dahlin et al., 2008), two fair quality RCTs (Hartke et al., 2003, van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) and one poor quality RCT (Draper et al., 2007) examined the effects of an education group on emotional wellbeing of carers of patients with stroke.

The high quality RCT (Franzen-Dahlin et al., 2008) randomized patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures on stroke-related topics and group discussions, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. Spouses’ ability to cope with stress was assessed by examining their sense of coherence using the short version of Antonovsky’s questionnaire. At 6 months and 12 months, no significant between-group differences were found for spouses’ ability to cope with stress.

The first fair quality RCT (Hartke et al., 2003) randomized spouses of patients with stroke (stage of stroke not specified) to either a telephone psycho-education group or a control group that received regular care. Both groups received written stress management advice. Carer emotional wellbeing was assessed by the Center for Epidemiologic Studies Depression Scale (CES-D), UCLA Loneliness Scale, Pressing Problem Index (PPI) and Caregiver Competence Scale (CCS). At 6 months follow-up a significant between-group difference was found for carer competence (CCS), in favour of the intervention group compared to the control group. Although the treatment group demonstrated significantly reduced stress (PPI) over time, no significant between-group differences were found for stress, depression, or loneliness.

The second fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) randomized patients with subacute or chronic stroke and their carers to a group education program (GP), a home visit education program (HP), or a control group. Carers’ emotional wellbeing was measured according to use of coping strategies by a short version of the Utrecht coping list (‘confronting’ and ‘seeking social support’ subscales), strain by the Caregiver Strain Index (CSI), and assertiveness by a questionnaire developed for the study. At 1 month and 7 months post-intervention, the GP group had significantly increased use of the coping strategy ‘seeking social support’ (Utrecht Coping List – short version) when compared to the control group only. There were no significant between-group differences between the GP and HP groups, or the HP and control groups. No significant differences were seen between groups for use of the ‘confronting’ coping strategy, strain or assertiveness.

The poor quality RCT (Draper et al., 2007) randomised carers of patients with aphasia post-stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). Psychological distress was measured by the General Health Questionnaire (GHQ-28). The education group demonstrated a significant improvement in psychological distress from baseline to post-treatment, however these results were not seen at follow-up. The wait list group did not demonstrate a significant improvement in psychological distress over time.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is limited evidence (level 1b) from one high quality RCT that a group education program is not more effective than regular care in improving emotional wellbeing (e.g. ability to cope with stress) in carers of patients with stroke.

>Note: However, two fair quality RCTs found that group education programs are more effective than regular care in improving factors such as carer competence and ability to seek social support in carers of patients with stroke.

Emotional wellbeing - Patients
Insufficient evidence
5

One poor quality RCT (Draper et al., 2007) investigated the effects of a group education program on the emotional well-being of patients with stroke. This poor quality RCT randomised carers of patients with aphasia post-stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). Patient behaviour and mood was measured by the Behaviour and Mood Disturbance Questionnaire. No significant changes were seen within either group from baseline to post-intervention or follow-up.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is insufficient evidence (level 5) to indicate whether a group education program is more effective than regular care in improving emotional wellbeing of carers of patients with subacute or chronic stroke.

Family functioning – Carers
Effective
2A

One fair quality RCT (Evans et al., 1988) investigated the effects of an education group on family function in carers of patients with stroke. This high quality RCT randomised carers of patients with stroke (time since stroke not specified) to an education group (EG), a counselling + education group (CEG), or a control group (no education or counselling). Family function was measured by the Family Assessment Device (FAD). At 6 months post-stroke, significant between-group differences were found for problem-solving, communication and global family function (FAD subscores), in favour of both the EG and CEG as compared to the control group. At 1 year post-stroke significant between-group differences were found for problem-solving, communication, global family function and affective involvement (FAD subscores) in favour of both the EG and CEG compared to the control group.

Conclusion: There is limited evidence (level 2a) from 1 fair quality RCT that a group education program is more effective than regular care in improving family function in carers of patients with stroke.

Health status and quality of life – Carers
Not effective
1A

One high quality RCT (Franzen-Dahlin et al., 2008), two fair quality RCTs (Larson et al., 2005; van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) and one poor quality RCT (Draper et al., 2007) investigated the effectiveness of an education group on the health status and quality of life of carers of patients with stroke.

The high quality RCT (Franzen-Dahlin et al., 2008) randomized patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures on stroke-related topics and group discussions, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. Spouses’ psychological health was assessed by the Comprehensive Psychopathological Rating Scale –Self-Affective (CPRS-S-A). At 6 and 12 months, no significant between-group differences were found. However, a sub-analysis of the intervention group alone found that carers who participated in meetings more frequently had better psychological health than those who participated less frequently.

The first fair quality RCT (Larson et al., 2005) randomized spouses of patients with subacute stroke to either a support and education program that provided lectures and facilitated discussions on stroke-related topics, or a control group that received regular information and could attend an open education session. Spouses’ quality of life was measured by a quality of life visual analogue scale, Life Situation among Spouses after the Stroke Event (LISS-questionnaire), Bradley’s wellbeing questionnaire, and graded visual analogue scale of the EuroQoL instrument. At 6 and 12 months, no significant between-group differences were reported on any measure.

The second fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) randomized patients with subacute or chronic stroke and their carers to a group education program (GP), a home visit education program (HP), or no education program (control group). Spouses’ physical wellbeing and vitality were measured by the Short Form-36 (SF-36). No significant between-group differences were found at 1 month or 7 months post-intervention.

The poor quality RCT (Draper et al., 2007) randomised carers of patients with aphasic stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). Carer quality of life was measured by the Quality of Life Questionnaire. No significant changes in quality of life were seen within either group from baseline to post-intervention or follow-up.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is strong evidence (level 1a) from one high quality RCT and two fair quality RCTs that a group education program is not more effective than regular care in improving health status and quality of life in carers of patients with stroke.

Health status and quality of life – Patients
Not effective
1B

One high quality RCT (Franzen-Dahlin et al., 2008) investigated the effects of an education group on health status and quality of life of patients with stroke. This high quality RCT randomised patients with stroke (stage of stroke not specified) to either an intervention group that attended lectures on stroke-related topics and group discussions, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. Spouses’ perception of the patient’s health state was assessed with the EuroQoL graded visual analogue scale (EuroQOL VAS). No significant between-group differences in perceived health state of patients were found at 6 or 12 months.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective that regular care in improving quality of life and health status in patients with stroke.

Knowledge of stroke - Carers
Effective
1a

One high quality RCT (Franzen-Dahlin et al., 2008), two fair quality RCTs (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002; Evans et al., 1988), and one pre-post study (Braithwaite et al., 1993) investigated the effects of a group education program on carers’ knowledge of stroke.

The high quality RCT (Franzen-Dahlin et al., 2008) randomized patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures and group discussions on stroke-related topics, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. A non-standardized questionnaire was used to measure carers’ knowledge of stroke. At 6 months, there was no significant difference between groups in relation to carers’ knowledge of stroke. However, reassessment at 12 months indicated a significant between-group difference in carers’ knowledge of stroke, in favor of the intervention group compared to the control group.

The first fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) randomized patients with subacute or chronic stroke and their carers to a group education program (GP), a home visit education program (HP), or a control group. Confidence in knowledge about patient care and self-efficacy were measured using a non-standardized instrument designed for the study. At 1-month post-intervention a significant between-group difference in confidence in knowledge about patient care was found in favour of both the HP group and the GP group compared to the control group. This remained significant at 7 months post-intervention for the GP group compared to the control group only. There were no significant differences between the HP and GP groups. No significant differences were found regarding confidence in knowledge regarding self-efficacy.

Note: The control group demonstrated significantly higher knowledge of patient care at baseline, which may have skewed the results.

A second fair quality RCT (Evans et al., 1988) randomized carers of patients with stroke (time since stroke not specified) to an education group (Ed), a counselling group (CEd), or a control group (no education or counselling). Carer knowledge of stroke was assessed by the Stroke Care Information Test (SCIT). At 6 months and 12 months post-stroke, there was a significant difference in carers’ knowledge of stroke, in favour of both the Ed and CEd groups when compared to the control group.

The pre-post study (Braithwaite et al., 1993) investigated the effects of a seminar on knowledge of stroke in patients with chronic stroke. Carers’ knowledge of stroke was assessed by a non-standardized 13-item knowledge scale. Carers’ post-seminar scores were higher than pre-seminar scores.

Conclusion: There is strong evidence (level 1a) from one high quality RCT and two fair quality RCTs that a group education program is more effective than regular care in improving knowledge of stroke in carers of patients with subacute or chronic stroke. One pre-post study also found improved carer knowledge of stroke following a group education program.

Note: However, the high quality RCT did not see the significant difference in knowledge until reassessment at 12 months.

Perceived social support - Carers
Not effective
1B

One high quality RCT (Franzen-Dahlin et al., 2008) and one fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) investigated the effects of a group education program on the perceived social support of carers of patients with stroke.

The high quality RCT (Franzen-Dahlin et al., 2008) randomized patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures on stroke-related topics and group discussions, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. Perceived social support was assessed by the abbreviated Swedish version of the Interview Schedule of Social Interaction. No significant between-group differences in perceived social support were found at 6 or 12 months.

The fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) randomized patients with subacute or chronic stroke and their carers to a group education program (GP), a home visit education program (HP), or a control group. Social support and satisfaction with social support were evaluated by adapted versions of the Social Support List-Interaction and the Social Support List-Discrepancy. At 7 months post-intervention there was a significant between-group difference in social support, in favour of the GP group compared to the control group. There were no significant differences between the HV and GP groups or between the HV and control groups.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than regular care in improving perceived social support in carers of patients with stroke.

Note: However, one fair quality RCT found that carers in a group education program had more social support than carers in the control group at 7 months post-intervention.

Personal adjustment – Patients
Not effective
2A

One fair quality RCT (Evans et al., 1988) investigated the effects of a group education program on personal adjustment in patients with stroke. This fair quality RCT randomised carers of patients with stroke (time since stroke not specified) to an education group (EG), a counselling + education group (CEG), or a control group (no education or counselling). Patient adjustment was measured by the Personal Adjustment and Role Skills Scale (PARS). No significant between-group differences were found in relation to patients’ adjustment at 6 or 12 months.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a group education program is not more effective than regular care in improving personal adjustment in patients with stroke.

Satisfaction with intervention - Carers
Not effective
1B

One high quality RCT (Franzen-Dahlin et al., 2008) examined the effectiveness of a group education program on satisfaction with information and services among carers of patients with stroke. This high quality RCT randomised patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures on stroke-related topics and group discussions, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. Carers’ satisfaction with information and services was measured by a non-standardized questionnaire. No significant between-group differences in satisfaction with the intervention program were found at 6 or 12 months.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than regular care in improving level of satisfaction with information or services amongst carers of patients with stroke.

Satisfaction with intervention - Patients
Not effective
1B

One high quality RCT (Franzen-Dahlin et al., 2008) examined the effectiveness of a group education program on satisfaction with information and services among patients with stroke. This high quality RCT randomised patients with stroke (stage of stroke not specified) and their spouses to either an intervention group that attended lectures on stroke-related topics and group discussions, or to a control group that received regular care. Both groups were able to attend weekly information sessions at the Stroke Unit during the patient’s hospital stay. Patients’ satisfaction with information and services was measured by a non-standardized questionnaire. No significant between-group differences were found at 6 or 12 months.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a group education program is not more effective than regular care in improving level of satisfaction of patients with stroke.

Use of social resources - Carers
Not efective
2A

One fair quality RCT (Evans et al., 1988) and one poor quality RCT (Draper et al., 2007) investigated the effects of an education group on use of social resources amongst carers of patients with stroke.

The fair quality RCT (Evans et al., 1988) randomised carers of patients with stroke (time since stroke not specified) to an education group (EG), a counselling group (CEG), or a control group (no education or counselling). Carers’ use of social resources was assessed by the ESCROW Profile. No significant between-group differences were found at 6 months or 1 year post-stroke.

The poor quality RCT (Draper et al., 2007) randomised carers of patients with aphasic stroke (stage of stroke not specified) to a 4-week group education program or a wait list control group that received the same program after 3 months (delayed treatment). Carers’ use of community services was measured by the Social Support Questionnaire. Carer participation in social and recreational activities was measured by the Measure of Social and Recreational Activities. No significant changes were seen within either group from baseline to post-intervention or follow-up.

Note: As this study did not report between-group differences, these results are not considered in the conclusion below.

Conclusion: There is limited evidence (level 2a) from 1 fair quality RCT that a group education program is not more effective than regular care in improving use of social resources by carers of patients stroke.

Home Visits

Emotional wellbeing - Carers
Not effective
2A

One fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) examined the effects of home visits on emotional wellbeing in carers of patients with subacute or chronic stroke. This fair quality RCT randomised patients and their carers to a group program (GP), a home visit program (HP), or a control group. Carers’ emotional wellbeing was measured according to use of coping strategies by a short version of the Utrecht coping list (‘confronting’ and ‘seeking social support’ subscales), strain by the Caregiver Strain Index (CSI), and assertiveness by a questionnaire developed for the study. At 1 month and 7 months post-intervention there was a significant between-group difference in the coping strategy ‘seeking social support’, in favour of the GP group compared to the control group. There were no significant between-group differences between the GP and HV groups, or the HV and control groups. No significant differences were seen between groups for use of the ‘confronting’ coping strategy, strain or assertiveness.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a home visit program is not more effective than regular care or a group program in improving emotional wellbeing in carers of patients with subacute or chronic stroke.

Health status - Carers
Not effective
2A

One fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) examined the effectiveness of home visits on health status in carers of patients with subacute or chronic stroke. This fair quality RCT randomised patients and their carers to a group program (GP), a home visit program (HP), or no education program (control group). Physical wellbeing, mental wellbeing, and vitality were measured by the Short Form-36 (SF-36). No significant between-group differences were found at 1 month or 7 months post-intervention.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a home visit program is not more effective than regular care or a group education program in improving health status of carers of patients with subacute or chronic stroke.

Knowledge of stroke – Carers
Effective
2A

One fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study vn den Heuvel et al., 2002) examined the effectiveness of home visits on knowledge of stroke in carers of patients with subacute or chronic stroke. This fair quality RCT randomised patients and their carers to a group program (GP), a home visit program (HP), or a control group. Knowledge of stroke was measured by a 30-item instrument evaluating carers’ confidence in their knowledge of patient care and self-efficacy. At 1-month post-intervention a significant between-group difference in confidence in knowledge about patient care was found in favour of both the HV group and the GP group compared to the control group. This difference did not remain significant at 7 months post-intervention for the HV group compared to the control group. There were no significant differences between the HP and GP groups. No significant differences were found regarding confidence in knowledge regarding self-efficacy.

Note: The control group demonstrated significantly higher knowledge of patient care at baseline, which may have skewed the results.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT that a home visit program is more effective than regular care (but is not more effective than a group program) in improving knowledge of stroke among carers of patients with subacute or chronic stroke, in the short term.

Note: These results should be interpreted with caution as the control group demonstrated significantly higher knowledge of patient care at baseline.

Social support - carers
Not effective
2A

One fair quality RCT (van den Heuvel et al., 2000 – and 7 months post intervention study van den Heuvel et al., 2002) examined the effectiveness of home visits on social support in carers of patients with subacute or chronic stroke. This fair quality RCT randomised patients and their carers to a group program (GP), a home visit program (HP), or no education program (control group). Social support and satisfaction with social support were assessed by the Social Support List – Interaction and the Social Support List – Discrepancy. At 7 months post-intervention there was a significant between-group difference in social support, in favour of the GP group only compared to the control group. There were no significant differences between the HV and GP groups or between the HV and control groups.

Conclusion: There is limited evidence (level 2a) from one fair quality RCT suggesting that a home visit program is not more effective than regular care or a group education program in improving social support among carers of patients with stroke.

Psychosocial Intervention Programs

Functional abilities – Patients
Not effective
1B

One high quality RCT (Glass et al., 2004) has investigated the impact of family intervention programs on the functional abilities of patients with subacute stroke. This high quality RCT ) randomized patients to either an intervention group that received the Families In Recovery From Stroke Trial (FIRST) psychosocial program, or a control group that received usual care. At 6 months post-randomization there were no significant between-group differences in functional abilities, as measured by the Barthel Index.

Conclusion 1: There is moderate evidence (level 1b) from one high quality RCT that a psychosocial family intervention program is not more effective than regular care in improving functional outcomes in patients with subacute stroke.

Telephone Intervention

Emotional wellbeing - Carers
Effective
1A

Two high quality RCTs (Grant et al., 1999, Grant et al., 2002) and one fair quality RCT (Hartke et al., 2003) examined the effects of telephone intervention in improving emotional wellbeing in carers of patients with stroke.

The first high quality RCT (Grant et al., 1999) randomized carers of patients to a telephone group, a home visit group, or a control group. The telephone group and home visit group learned problem solving techniques while the control group received sham telephone contact. At 2, 5, and 13 weeks, carers were assessed for depression by the Center for Epidemiological Studies Depression Scale, carer preparedness by the Preparedness for Caregiving Scale, and carer burden by the Caregiver Burden Scale. The telephone group demonstrated significantly reduced depression and significantly improved preparedness at 2 and 5 weeks as compared to the home visit group and control group, but these between-group differences were insignificant at 13 weeks. No significant between-group differences were found in carer burden at any assessment point.

The second high quality RCT (Grant et al., 2002) randomized patients with stroke (time since stroke not specified) and their carers to receive social problem-solving telephone partnership (SPTP) treatment, sham treatment, or regular care (control group). Outcomes were administered during the intervention (5 and 9 weeks post-discharge) and after the intervention (13 weeks post-discharge), and included: depression by the Center for Epidemiological Studies Depression Scale, preparedness by the Preparedness for Caregiving Scale, and burden by the Caregiving Burden Scale. Significant between-group differences in carer preparedness and depression were found at all time points, in favour of the SPTP group compared to the sham group and the control group. There were no significant between-group differences in carer burden at any time point.

The fair quality RCT (Hartke et al., 2003) randomized spouses of patients with stroke (time since stroke not specified) to either an intervention group that received telephone group education and written stress management advice, or a control group that received written stress management advice only. Carer emotional wellbeing was evaluated according to depression by the Center for Epidemiologic Studies Depression Scale (CES-D), burden by the Burden Interview (BI), loneliness by the UCLA Loneliness Scale, and stress by the Pressing Problem Index (PPI). Carers’ competence was assessed by the Caregiver Competence Scale (CCS). At 6 months follow-up, significant between-group differences were found for burden and carer competence in favour of the intervention group compared to the control group. No significant between-group differences were found for depression, loneliness, or stress.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs and one fair quality RCT that telephone interventions are more effective than control treatments (e.g. home visit group, sham treatment, written information or regular care) in improving emotional wellbeing in carers of patients with stroke.

Note: The two high quality RCTs that used problem-solving telephone partnerships found significant differences in carer depression and carer preparedness but no improvement in carer burden. The fair quality RCT that used telephone education groups found significantly improved carer burden and carer competence but no improvement in carer depression, loneliness or stress.

Health status - Carers
Not effective
1A

Two high quality RCTs (Grant et al., 1999, Grant et al., 2002) examined the effectiveness of telephone interventions in improving health status in carers of patients with stroke.

The first high quality RCT (Grant et al., 1999) randomized carers of patients to a telephone group, a home visit group, or a control group. The telephone group and home visit group learned problem solving techniques while the control group received sham telephone contact. At 2, 5, and 13 weeks, carers’ health status was assessed by the physical functioning and general health subscales of the Medical Outcomes Study Short Form Health Survey (SF-36). There were no significant between-group differences for general health at any assessment point.

The second high quality RCT (Grant et al., 2002) randomized patients with stroke (time since stroke not specified) and their carers to receive social problem-solving telephone partnership (SPTP) treatment, sham treatment, or regular care (control group). Carers were assessed during intervention (5 and 9 weeks post-discharge) and after intervention (13 weeks post-discharge) for general health by the Medical Outcomes Study Short Form Health Survey (SF-36). Significant between-group differences were found on the social functioning dimension of the SF-36 at all time points, in favour of the SPTP group compared to the sham treatment group and the control group. The SPTP group demonstrated significant improvements over time on the SF-36 vitality, mental health and role limitations due to emotional problems dimensions. No other significant between-group differences for general health were seen at any time points. Interestingly, the control group demonstrated a significant deterioration on the SF-36 mental health dimension over time.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that telephone interventions are not more effective than control treatments (e.g. home visit group, sham treatment or regular care) in improving health status in carers of patients with stroke.

Note: However, one high quality RCT reported a significant between-group difference in social functioning.

Problem solving ability - Carers
Effective
1A

Two high quality RCTs (Grant et al., 1999, Grant et al., 2002) examined the effectiveness of telephone interventions in improving problem-solving ability in carers of patients with stroke.

The first high quality RCT (Grant et al., 1999) randomized carers of patients to a telephone group, a home visit group, or a control group. The telephone group and home visit group learned problem solving techniques while the control group received sham telephone contact. At 2, 5, and 13 weeks, carers were assessed for problem solving ability by the Problem Solving Inventory. The telephone group had significantly better problem-solving skills at 2 and 5 weeks as compared to the home visit group and control group, but these between-group differences were insignificant at 13 weeks.

The second high quality RCT (Grant et al., 2002) randomized patients with stroke (time since stroke not specified) and their carers to receive social problem-solving telephone partnership (SPTP) treatment, sham treatment, or regular care (control group). Carers were assessed during intervention (5 and 9 weeks post-discharge) and after intervention (13 weeks post-discharge), for problem-solving ability by the Social Problem Solving Inventory-Revised. Significant between-group difference in social problem solving skills (less negative orientation, less impulsivity/carelessness and more rational problem solving) were seen in favour of the SPTP group compared to the sham group and control group at all time points. Interestingly, the control group demonstrated a significant deterioration in positive problem orientation over time.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that telephone interventions that provide problem-solving training are more effective than control treatments (e.g. home visit group, sham treatment or regular care) in improving problem solving skills in carers of patients with stroke.

Note: However, 1 of the high quality RCTs had significant differences at 2 and 5 weeks, but not at 13 weeks.

Satisfaction with care - Carers
Not effective
1A

Two high quality RCTs (Grant et al., 1999, Grant et al., 2002) examined the effectiveness of telephone interventions in improving satisfaction with care in carers of patients with stroke.

The first high quality RCT (Grant et al., 1999) randomized carers of patients to a telephone group, a home visit group, or a control group. The telephone group and home visit group learned problem solving techniques while the control group received sham telephone contact. At 2, 5, and 13 weeks, carers were assessed for satisfaction with care by the Client Satisfaction Questionnaire. No significant between-group differences were found at any assessment point.

The second high quality RCT (Grant et al., 2002) randomized patients and their carers to receive social problem-solving telephone partnership (SPTP) treatment, sham treatment, or regular care (control group). Carers were assessed during intervention (5 and 9 weeks post-discharge) and after intervention (13 weeks post-discharge), for satisfaction with care by the client Satisfaction Questionnaire. No significant between-group differences were found at any time points.

Conclusion: There is strong evidence (level 1a) from two high quality RCTs that telephone interventions are not more effective than control treatments (e.g. home visit group, sham treatment or regular care) in improving satisfaction with care among carers of patients with stroke.

Web Education Programs

Emotional wellbeing - Carers
Not effective
1B

One high quality RCT (Pierce et al., 2009) examined the effectiveness of web-based stroke intervention on the emotional wellbeing of carers of patients with subacute or chronic stroke. This high quality RCT randomized carers to either a Web user group or a non-Web user group. Wellbeing of carers was assessed by the Centre for Epidemiological Studies Depression scale (CES-D) and the Satisfaction with Life Scale (SWLS). No significant between-group differences were found for carer wellbeing during the 1-year intervention.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a web-based stroke intervention is not more effective than regular care in improving emotional wellbeing in carers of patients with subacute or chronicstroke.

Health care service use - Patients
Effective
1B

One high quality RCT (Pierce et al., 2009) examined the effectiveness of web-based stroke intervention on the health care service use in patients with subacute or chronic stroke. This high quality RCT randomised carers of patients to either a Web user group or a non-Web user group. Health care service use was measured by self-reported visits to a provider and/or an emergency department and re-admissions to a hospital, or placements in a nursing home. There were significant between-group differences for emergency department visits and hospital re-admissions, with significantly fewer visits and re-admissions among patients in the Web user group as compared to the non-Web user group during the one-year intervention. No significant between-group differences were found in the number of provider visits during the 1-year intervention. Because of the small number of occurrences, nursing home placements were not statistically analysed.

Conclusion: There is moderate evidence (level 1b) from one high quality RCT that a web-based stroke intervention is more effective than regular care in reducing use of hospital services (i.e. emergency department visits and hospital re-admissions) but not provider services in patients with subacute or chronic stroke.

References

Braithwaite, V., & McGown, A. (1993). Caregivers’ emotional well-being and their capacity to learn about stroke. Journal of Advanced Nursing, 18, 195-202.

Clark, M.S., Rubenach, S., & Winsor, A. (2003). A randomized controlled trial of an education and counselling intervention for families after stroke. Clinical Rehabilitation, 17, 703-712.

Draper, B., Bowring, G., Thompson, C., Van Heyst, J., Conroy, P. & Thompson, J. (2007). Stress in caregivers of aphasic stroke patients: a randomized controlled trial. Clinical Rehabilitation, 21, 122-130.

Evans, R.L., Matlock, A.L., Bishop, D.S., Stranahan, S., & Pederson C. (1988). Family intervention after stroke: Does counselling or education help? Stroke, 19, 1243-1249.

Franzén-Dahlin, Å. J., Larson, J.V., Murray, V.R., Wredling, R., & Billing E. (2008). A randomized controlled trial evaluating the effect of a support and education programme for spouses of people affected by stroke. Clinical Rehabilitation, 22, 722–730.

Glass, T.A., Berkman, L.F., Hiltunen, E.F., Furie, K., Glymour, M.M., Fay, M.E., & Ware J. (2004). The Families In Recovery from Stroke Trial (FIRST): Primary study results. Psychosomatic Medicine, 66, 889-897.

Grant, J.S. (1999). Social problem-solving partnerships with family caregivers. Rehabilitation Nursing, 24, 254-260.

Grant, J.S., Elliott, T.R., Weaver, M., Bartolucci, A.A., & Giger, J.N. (2002). Telephone intervention with family caregivers of stroke survivors after rehabilitation. Stroke, 33, 2060-2065.

Hartke, R.J., & King, R.B. (2003). Telephone group intervention for older caregivers. Topics in Stroke Rehabilitation, 9(4), 65-81.

Kalra, L., Evans, A., Perez, I., Melbourn, A., Patel, A., Knapp, M., & Donaldson, N. (2004). Training carers of stroke patients: Randomized controlled trial. British Medical Journal, 328(7448), 1099-1103.

Larson, J., Billing, E., von Arbin, M., Murray, V., & Wredling R. (2005). The impact of a nurse-led support and education programme for spouses of stroke patients: A randomized controlled trial. Journal Of Clinical Nursing, 14, 995–1003.

Perrin, P. B., Johnston, A., Vogel, B., Heesacker, M., Vega-Trujillo, M., Anderson, J., & Rittman, M. (2010). A culturally sensitive Transition Assistance Program for stroke caregivers: Examining caregiver mental health and stroke rehabilitation. Journal of Rehabilitation Research and Development, 47(7), 605-616.

Pierce, L.L., Steiner, V.L., Khuder, S.A., Govoni, A.L., & Horn, L.J. (2009). The effect of a Web-based stroke intervention on carers’ well-being and survivors’ use of healthcare services. Disability and Rehabilitation, 31, 1676-1684.

van den Heuvel, E., de Witte, L., Nooyen-Haazen, I., Sanderman, R., & Meyboom-de Jong, B. (2000). Short-term effects of a group support program and an individual support program for caregivers of stroke patients. Patient Education and Counselling, 40, 109-120.

van den Heuvel, E.T.P., De Witte, L.P., Stewart, R.E, Schure, L.M., Sanderman, R., & Meyboom-de Jong, B. (2002). Long-term effects of a group support program and an individual support program for informal carers of stroke patients: Which carers benefit the most? Patient Education and Counselling, 47, 291-299.

Fatigue

Evidence Reviewed as of before: 28-08-2019
Author(s)*: Tatiana Ogourtsova, PhD OT; Annabel McDermott, OT
Content consistency: Gabriel Plumier
Patient/Family Information Table of contents

Introduction

Fatigue is a multidimensional, motor-perceptive, cognitive and emotional experience. It is described as “a feeling of early exhaustion with weariness, lack of energy and aversion to effort that develops during physical or mental activity and is usually not ameliorated by rest” (Staub & Bogousslavsky, 2001). Post-stroke fatigue can be distinguished into three types:

1) Physical fatigue (i.e. inability to perform activities at physical lengths and intensities);
2) Cognitive fatigue (i.e. inability to perform activities at concentration, multitasking and/or cognitive load stressors lengths and intensities); and
3) Emotional fatigue (i.e. getting tired when facing demanding interactions or relationships) (Terrill, Schwartz & Belagaje, 2018).

Post-stroke fatigue is a prevalent stroke consequence, affecting more than 50% of stroke survivors (Cumming et al. 2016). Prevalence cannot be explained by type of stroke, side of stroke or lesion location. Prevalence is also not associated to stroke severity, meaning that prevalence is the same in mild stroke as compared to severe stroke (Acciarresi et al., 2014). Fatigue is associated with depressive symptoms but can be present without depression. Its association to cognitive deficits and gender remains unclear. However, higher levels of fatigue are found to be associated with female sex, depression, longer post-stroke time period and greater disability (Cumming et al., 2018).

A documentary (lasting 40 minutes) presenting how fatigue impacts daily life of five individuals and what strategies they use to effectively cope with fatigue was produced in March 2019. The documentary (in French) can be viewed by clicking here.

Patient/Family Information

Author: Tatiana Ogourtsova, PhD OT; Annabel McDermott, OT

Since my stroke I feel tired. Am I normal?

Fatigue is common in patients with stroke. Approximately 50% of stroke survivors will experience fatigue after having a stroke, no matter what the severity of the stroke is.

What is fatigue after stroke?

Fatigue is a feeling of early tiredness, lack of energy and aversion to effort. Fatigue occurs during or after activity that is physically demanding, mentally demanding (i.e. requiring attention and concentration) or emotionally demanding (e.g. conflict with another person). The main difference with regular fatigue is that post-stroke fatigue usually does not get better as fast with rest.

Are there different types of fatigue?

Fatigue after stroke is usually distinguished into three types: 1) physical, 2) mental or cognitive, and 3) emotional.

Physical fatigue is when a person is unusually tired after physical activity, or is unable to perform a physical activity that requires more effort or strength (e.g. walking, going up the stairs) or for a long period of time.

Mental or cognitive fatigue is when a person is unusually tired after or unable to perform an activity that requires attention, concentration or multitasking (e.g. reading, following a movie).

Emotional fatigue is when a person is unusually tired after difficult interactions or conflicts with close ones (e.g. marital conflict, being uncomfortable with someone, difficulty managing emotions).

When would fatigue appear after a stroke?

Fatigue after stroke can appear at different times. Some people experience fatigue shortly after the stroke. Others experience fatigue much later after stroke, even 1 year after stroke.

Is fatigue caused by my stroke?

It is possible that the fatigue you are experiencing is an effect of your stroke. Here is one possible explanation:

Injury to your brain

There are debates on whether the site of the lesion (stroke location) is related to symptoms of fatigue. Some research shows that people who have a stroke in specific parts of the brain (basal ganglia, internal capsule, brain stem, thalamus) are more likely to experience post-stroke fatigue. Other research argues that it is the number of strokes that matter, where fatigue is more common in people who have had several strokes rather than in those who had a stroke for the first time.

How do I know if I have post-stroke fatigue? What are the common signs of fatigue after a stroke?

People who have fatigue after stroke share some common traits such as:

  • Low energy
  • Feeling weary soon after starting a physical activity (e.g. walking, exercise), an activity that is mentally demanding (e.g. reading, social event) or an activity that is emotionally demanding (e.g. conflict with another person).
  • Feeling a loss of self-control
  • Feeling emotional instability
  • Feeling of tiredness that becomes greater during physical exercise, during activities that require concentration and/or with stress.

Is it easy to detect fatigue after a stroke?

It is often easy to detect fatigue in a person that has had a stroke. However, it can be difficult to identify the type of fatigue you are experiencing and what causes you to feel tired. Your rehabilitation therapist may often ask about your level of fatigue. However, sometimes people who had a stroke have problems speaking or understanding words; this makes it more difficult to share information about fatigue symptoms.

How is the diagnosis of fatigue after a stroke made?

Your therapist may ask you a series of questions or have you or your caregiver fill out a questionnaire. This will help to identify presence of fatigue.

Are there different kinds of therapies for fatigue?

There are many different therapies available for fatigue after stroke. This module includes the following interventions:

  • Mindfulness-based stress reduction (MBSR): a program that helps you to calm you mind and body to help cope with illness, pain, and stress.
  • Inspiratory muscle training (IMT): breathing exercises using a breathing device.
  • Game-based team therapy: playing games in groups that are competitive in nature (e.g. playing ball with scores).
  • Multimodal interventions: rehabilitation that combines physical exercises and cognitive exercises together.
  • Psychoeducation: education, advice, recommendations, and strategies to help change your thoughts and behavior.

There is no known ‘cure’ for post-stroke fatigue. However, when we asked individuals who have had a stroke for their key strategies to cope with fatigue post-stroke, they told us:

  • To accept that you may need to reduce the frequency or intensity of an activity;
  • To plan rest periods into your daily routine;
  • To organise your environment and routine;
  • To conserve your energy when doing everyday activities by making a task simpler;
  • To identify the type of fatigue you are prone to and the activities that trigger your fatigue;
  • To prioritise activities that are meaningful to you and your well-being;
  • To communicate with your close-ones about your level of fatigue;
  • To engage in planned exercise such as aerobics to increase endurance;
  • To practice good sleep patterns.

What fatigue therapies work for stroke?

Fatigue therapies have been examined using high and fair quality research studies. Some therapies were shown to improve mental fatigue and other important domains such as independence in self-care activities, depression, sleep, endurance and respiratory function in some patients after stroke.

In particular, for patients with chronic stroke (more than 6 months after stroke), mindfulness-based stress reduction therapy has been shown to be useful to improve mental fatigue, depression, anxiety, and cognitive abilities (e.g. attention).

For patients with stroke across the recovery continuum (acute, subacute and/or chronic), inspiratory muscle training, game-based team therapy, and multimodal interventions have been shown to be useful to improve fatigue, independence in everyday activities (e.g. dressing, walking), respiratory function (e.g. inspiration and expiration lung capacities), depression, and sleep.

What can I expect in terms of therapy for fatigue?

Your therapist will discuss with you what fatigue therapy is most suitable for you. How often and for how long the therapy is provided for depends on the nature of therapy.

Who provides the treatment?

Different health-care providers can administer fatigue therapies: occupational therapists, physiotherapists, psychologists, neuropsychologists and nurses.

Are there any side effects or risks?

Fatigue therapies are usually administered by a trained health professional at a rehabilitation clinic or at home. Your therapist will monitor your reactions to the therapy closely. It is important to report to your therapist any changes in your state (e.g. more or less fatigue, sleep quality, independence for daily tasks). Your therapist will adjust the nature, intensity and the duration of therapy according to your ability, endurance and progress.

Is it possible to speak to someone who had a stroke?

Support groups are available in some regions for people who have had a stroke. You can also find stories about people who have had problems similar to yours. Consult your National Stroke Association.

How does my fatigue impact on my recovery?

Fatigue after stroke may make you feel less motivated, more tired, and also may cause you to have trouble concentrating. All these symptoms of fatigue will slow down your recovery. Studies have shown that people who have fatigue after stroke do not get better as quickly as people who do not have fatigue.

I would like to know more about fatigue and stroke?

Understanding how fatigue and stroke happen can reassure you. There are many resources online. Your health care provider can help answer your specific questions.

A documentary (lasting 40 minutes) presenting how fatigue impacts daily life of five individuals and what strategies they use to effectively cope with fatigue was produced in March 2019. The documentary (in French) can be viewed by clicking here.

Please click here to access a video on fatigue posted by Canadian Partnership for stroke recovery.

Clinician Information

Note: When reviewing the findings, it is important to note that they are always made according to randomized clinical trial (RCT) criteria – specifically as compared to a control group. To clarify, if a treatment is “effective” it implies that it is more effective than the control treatment to which it was compared. Non-randomized studies are no longer included when there is sufficient research to indicate strong evidence (level 1a) for an outcome.

The current module includes studies examining interventions specific for post-stroke fatigue. Studies were excluded based on the following exclusion criteria: i) fatigue is a secondary outcome and intervention is not fatigue-specific; and ii) the type of intervention is represented by an existing Stroke Engine module. Please see the following Stroke Engine modules for more information on the effects of these intervention on fatigue: Cognitive Rehabilitation, Robotics, Aerobic Exercise, Transcranial Direct Current Stimulation/Transcranial Magnetic Stimulation, Task-Oriented Upper Extremity, Video Games, Balance Training, and Task-Oriented Lower Extremities. The current module includes eight studies: two high quality RCTs, three fair quality RCTs and three non-RCTs design studies. Of these, seven studies included patients with stroke not defined to one specific post-stroke time period (e.g. participants in the subacute or chronic stage of stroke recovery). The following five types of interventions for post-stroke fatigue emerged and are included in the present module: Mindfulness-based stress reduction, Inspiratory muscle training, Group sports, Multimodal intervention (cognitive and physical training), and Fatigue management psychoeducation.

No studies on interventions for post-stroke fatigue were found for patients specifically in the acute and subacute phase of stroke recovery.

Outcomes

Chronic phase - Mindfulness

Anxiety
Not effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on anxiety in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Anxiety was measured by the Comprehensive Psychopathological Rating Scale (CPRS: Anxiety) at post-treatment (8 weeks). No significant between-group difference was found.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is not more effective than no treatment in reducing anxiety in patients with chronic stroke.

Depression
Not effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on depression in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Depression was measured by the Comprehensive Psychopathological Rating Scale (CPRS: Depression) at post-treatment (8 weeks). No significant between-group difference was found.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is not more effective than no treatment in reducing depression in patients with chronic stroke.

Executive function
Not effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on executive functions in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Executive function was measured by the Trail Making Test (TMT: A, B, C, D) and the Wechsler Adult Intelligence Scale-III: Digit Symbol-Coding Test at post-treatment (8 weeks). A significant between-group difference was found on only one measure of executive function (TMT – A) in favour of MBSR treatment vs. no treatment.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is not more effective than no treatment in improving executive function in patients with chronic stroke.
Note: Significant between-group differences in TMT-A were also found at baseline, favoring MBSR vs. no treatment. Significant between-group differences in TMT-B and TMT-C scores were found at post-treatment, but differences did not remain significant when adjusted with TMT-A scores.

Mental fatigue
Effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on mental fatigue in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Mental fatigue was measured by the Self-Evaluation Questionnaire for Mental Fatigue at post-treatment (8 weeks). A significant between-group difference was found in favour of MBSR treatment vs. no treatment.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is more effective than no treatment in reducing mental fatigue in patients with chronic stroke.

Reading speed
Not effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on reading speed in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Reading speed was measured by a Reading Speed Dyslexia Screening test at post-treatment (8 weeks). No significant between-group difference was found.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is not more effective than no treatment in improving reading speed in patients with chronic stroke.

Verbal fluency
Not effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on verbal fluency in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Verbal fluency was measured by the FAS Verbal Fluency Test at post-treatment (8 weeks). No significant between-group difference was found.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is not more effective than no treatment in improving verbal fluency in patients with chronic stroke.

Working memory
Not effective
2a

One fair quality RCT (Johansson, Bjuhr & Ronnback, 2012) investigated the effect of mindfulness-based stress reduction (MBSR) treatment on working memory in patients with chronic acquired brain injury (62% of participants with stroke). This fair quality RCT randomized patients to receive MBSR treatment or delayed MBSR treatment (no treatment). Working memory was measured by the Wechsler Adult Intelligence Scale-III: Digit Span Test at post-treatment (8 weeks). No significant between-group difference was found.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that mindfulness-based stress reduction treatment is not more effective than no treatment in improving working memory in patients with chronic stroke.

Phase not specific to one period - Fatigue management education

Activities of daily living
Not effective
2a

One fair quality RCT (Clarke, Baker-Collo & Feigin, 2012) investigated the effect of fatigue management education on activities of daily living (ADLs) in patients with stroke. This fair quality RCT randomized patients with subacute/chronic stroke to receive post-stroke fatigue management psychoeducation or general stroke psychoeducation. ADLs were measured by the Barthel Index and the modified Rankin Scale at post-treatment (6 weeks) and follow-up (3 months). No significant between-group differences were found on any measure at either time point.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that post-stroke fatigue management education is not more effective than a comparison intervention (general stroke education) in improving activities of daily living in patients with stroke.

Anxiety
Not effective
2a

One fair quality RCT (Clarke, Baker-Collo & Feigin, 2012) investigated the effect of fatigue management education on anxiety in patients with stroke. This fair quality RCT randomized patients with subacute/chronic stroke to receive post-stroke fatigue management psychoeducation or general stroke psychoeducation. Anxiety was measured by the Hospital Anxiety and Depression Scale (HADS: Anxiety) at post-treatment (6 weeks) and follow-up (3 months). No significant between-group difference was found at either time point.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that post-stroke fatigue management education is not more effective than a comparison intervention (general stroke education) in reducing anxiety in patients with stroke.

Depression
Not effective
2a

One fair quality RCT (Clarke, Baker-Collo & Feigin, 2012) and one non-randomized study (Wu et al., 2017) investigated the effect of fatigue management education on anxiety in patients with stroke.

The fair quality RCT (Clarke, Baker-Collo & Feigin, 2012) randomized patients with subacute/chronic stroke to receive post-stroke fatigue management psychoeducation or general stroke psychoeducation. Depression was measured by the Hospital Anxiety and Depression Scale (HADS: Depression) at post-treatment (6 weeks) and follow-up (3 months). No significant between-group difference was found at either time point.

The non-randomized pre-post design study (Wu et al., 2017) allocated patients with subacute/chronic stroke to receive psychoeducation for post-stroke fatigue. Depression was measured by the Patient Health Questionnaire (PHQ-9) at post-treatment (6 sessions) and follow-up (1 month, 3 months). A significant improvement was found at one follow-up time point only (1 month).

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that post-stroke fatigue management education is not more effective than a comparison intervention (general stroke education) in reducing depression in patients with stroke. Similarly, a pre-post design study found no significant immediate or long-term benefits from a psychoeducation program.

Fatigue
Not effective
2a

One fair quality RCT (Clarke, Baker-Collo & Feigin, 2012), and two non-randomized studies (Wu et al., 2017; Boehm, Muehlberg & Stube, 2015) investigated the effect aof fatigue management education on fatigue in patients with stroke.

The fair quality RCT (Clarke, Baker-Collo & Feigin, 2012) randomized patients with subacute/chronic stroke to receive post-stroke fatigue management psychoeducation or general stroke psychoeducation. Fatigue was measured by the Fatigue Severity Scale, a Visual Analogue Scale for Fatigue (Fatigue, Vigor), and the Checklist of Individual Strength at post-treatment (6 weeks) and follow-up (3 months). No significant between-group differences were found on any measure at either time point.

A non-randomized pre-post design study (Wu et al., 2017) allocated patients with subacute/chronic stroke to receive psychoeducation for post-stroke fatigue. Fatigue was measured by the Fatigue Assessment Scale at post-treatment (6 sessions) and follow-up (1 month, 3 months). A significant improvement was found at one follow-up time point only (3 months).

A case report (Boehm, Muehlberg & Stube, 2015) allocated one patient with stroke and post-stroke fatigue (time since stroke not specified) to receive a fatigue management course. Fatigue was measured by the Fatigue Impact Scale (FIS: Physical Fatigue, Cognitive Fatigue, Social Fatigue) at post-treatment (5 weeks). Improvements were noted on all measures of fatigue, however no statistical results were provided. This study is not used in the conclusion below.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that post-stroke fatigue management education is not more effective than a comparison intervention (general stroke education) in reducing fatigue in patients with stroke. A non-randomized also reported no significant improvements in fatigue immediately following a psychoeducation program.

Health-related quality of life
Not effective
2a

One fair quality RCT (Clarke, Baker-Collo & Feigin, 2012) investigated the effect of fatigue management education on health-related quality of life in patients with stroke. This fair quality RCT randomized patients with subacute/chronic stroke to receive post-stroke fatigue management psychoeducation or general stroke psychoeducation. Health-related quality of life was measured by the Short Form-36 (SF-36: Physical functioning, Role physical, Role emotional, Energy/Fatigue, Emotional wellbeing, Social functioning, Pain, General Health) at post-treatment (6 weeks) and follow-up (3 months). No significant between-group differences were found at either time point.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that post-stroke fatigue management education is not more effective than a comparison intervention (general stroke education) in improving health-related quality of life in patients with stroke.

Instrumental activities of daily living
Insufficient evidence
5

One non-randomized study (Wu et al., 2017) investigated the effect of fatigue management education on instrumental activities of daily living (IADLs) in patients with stroke. This pre-post design study allocated patients with subacute/chronic stroke to receive psychoeducation for post-stroke fatigue. IADLs were measured by the Nottingham Extended Activities of Daily Living at post-treatment (6 sessions) and follow-up (1 month, 3 months). No significant improvements were found at any time point.

Conclusion: There is insufficient evidence (Level 5) regarding the effect of post-stroke fatigue management education on instrumental activities of daily living in patients with stroke. However, one pre-post design study found no significant improvements in instrumental activities of daily living following an psychoeducation program.

Occupational performance
Insufficient evidence
5

One case-report (Boehm, Muehlberg & Stube, 2015) investigated the effect of fatigue management education on occupational performance in a patient with stroke. This case-reported allocated one patient with stroke and post-stroke fatigue (time since stroke not specified) to receive a fatigue management course. Occupational performance was measured by the Canadian Occupational Performance Measure (COPM: Perceived performance, Satisfaction) at post-treatment (5 weeks). No improvements were noted and no statistical results were provided.

Conclusion: There is insufficient evidence (Level 5) regarding the effect of post-stroke fatigue management education on occupational performance in patients with stroke. However, one case report found no improvement in occupational performance following a fatigue management course.

Stroke outcomes
Insufficient evidence
5

One non-randomized study (Wu et al., 2017) investigated the effect of fatigue management education on stroke outcomes in patients with stroke. This pre-post design study allocated patients with subacute/chronic stroke to receive psychoeducation for post-stroke fatigue. Stroke outcomes were measured by the Stroke Impact Scale (SIS: General recovery, Physical strength, Memory and thinking, Emotion, Communication, Daily activities, Mobility, Hand function, Social activity) at post-treatment (6 sessions) and follow-up (1 month, 3 months). Significant improvements were noted in some stroke outcomes at post-treatment (SIS: Mobility, Social activity), 1-month follow-up (SIS: Mobility, Social activity), and 3-month follow-up (SIS: General recovery, Memory and thinking, Emotion, Mobility, Social activity).

Conclusion: There is insufficient evidence (Level 5) regarding the effect of post-stroke fatigue management education on stroke outcomes in patients with stroke. However, one pre-post design study found significant improvements in some stroke outcomes following a psychoeducation program.

Phase not specific to one period - Group sports

Depression
Effective
2b

One quasi-experimental design study (Kim, 2012) investigated the effect of group sports on depression in patients with stroke. This quasi-experimental design study allocated patients with acute/subacute/chronic stroke to engage in group sports (ball games) or no treatment; both groups received conventional rehabilitation. Depression was measured by the Korean version of the State Depression Scale at post-treatment (2 weeks). A significant between-group differences was found, favoring group sports vs. no treatment.

Conclusion: There is limited evidence (Level 2b) from one quasi-experimental design study that group sports are more effective than no treatment in reducing depression in patients with stroke.

Fatigue
Effective
2b

One quasi-experimental design study (Kim, 2012) investigated the effect of group sports on fatigue in patients with stroke. This quasi-experimental design study allocated patients with acute/subacute/chronic stroke to engage in group sports (ball games) or no treatment; both groups received conventional rehabilitation. Fatigue was measured by the Brief Fatigue Inventory at post-treatment (2 weeks). A significant between-group difference was found, favoring group sports vs. no treatment.

Conclusion: There is limited evidence (Level 2b) from one quasi-experimental design study that group sports are more effective than no treatment in reducing fatigue in patients with stroke.

Functional independence
Effective
2b

One quasi-experimental design study (Kim, 2012) investigated the effect of group sports on functional independence in patients with stroke. This quasi-experimental design study allocated patients with acute/subacute/chronic stroke to engage in group sports (ball games) or no treatment; both groups received conventional rehabilitation. Functional independence was measured by the Functional Independence Measure (FIM: Motor, Cognition, Total scores) at post-treatment (2 weeks). Significant between-group differences were found in two measures of functional independence (FIM: Motor, Total scores), favoring group sports vs. no treatment.

Conclusion: There is limited evidence (Level 2b) from one quasi-experimental design study that group sports are more effective than no treatment in improving functional independence in patients with stroke.

Sleep quality
Effective
2b

One quasi-experimental design study (Kim, 2012) investigated the effect of group sports on sleep quality in patients with stroke. This quasi-experimental design study allocated patients with acute/subacute/chronic stroke to engage in group sports (ball games) or no treatment; both groups received conventional rehabilitation. Sleep quality was measured by the Pittsburgh Sleep Quality Index at post-treatment (2 weeks). A significant between-group difference was found, favoring group sports vs. no treatment.

Conclusion: There is limited evidence (Level 2b) from one quasi-experimental design study that group sports are more effective than no treatment in improving sleep quality in patients with stroke.

Phase not specific to one period - Inspiratory muscle training

Activities of daily living
Effective
2a

One fair quality RCT (Chen et al., 2016) investigated the effect of inspiratory muscle training (IMT) on activities of daily living (ADLs) in patients with stroke. This fair quality RCT randomized patients with acute/subacute stroke to receive IMT or no treatment; both groups received conventional rehabilitation. ADLs were measured by the Barthel Index at post-treatment (10 weeks). A significant between-group difference was found, favoring IMT vs. no treatment. Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that inspiratory muscle training is more effective than no treatment in improving activities of daily living in patients with stroke.

Fatigue
Not effective
1b

One high quality RCT (Cho et al., 2018) and one fair quality RCT (Chen et al., 2016) investigated the effect of inspiratory muscle training (IMT) on fatigue in patients with stroke.

The high quality RCT (Cho et al., 2018) randomized patients with subacute/chronic stroke to receive IMT or no treatment; both groups received conventional physical therapy. Fatigue was measured by the Fatigue Severity Scale at post-treatment (6 weeks). No significant between-group difference was found.

The fair quality RCT (Chen et al., 2016) randomized patients with acute/subacute stroke to receive IMT or no treatment; both groups received conventional rehabilitation. Fatigue was measured by the Fatigue Assessment Scale at post-treatment (10 weeks). No significant between-group difference was found. Conclusion: There is moderate evidence (Level 1b) from one high quality RCT and one fair quality RCT that inspiratory muscle training is not more effective than no treatment in reducing fatigue in patients with stroke.

Perceived exertion
Not effective
2a

One fair quality RCT (Chen et al., 2016) investigated the effect of inspiratory muscle training (IMT) on perceived exertion in patients with stroke. This fair quality RCT randomized patients with acute/subacute stroke to receive IMT or no treatment; both groups received conventional rehabilitation. Perceived exertion was measured by the modified Borg Scale at post-treatment (10 weeks). No significant between-group difference was found.

Conclusion: There is limited evidence (Level 2a) from one fair quality RCT that inspiratory muscle training is not more effective than no treatment in improving perceived exertion in patients with stroke.

Respiratory function
Effective
1b

One high quality RCT (Cho et al., 2018) and one fair quality RCT (Chen et al., 2016) investigated the effect of inspiratory muscle training (IMT) on respiratory function in patients with stroke.

The high quality RCT (Cho et al., 2018) randomized patients with subacute/chronic stroke to receive IMT or no treatment; both groups received conventional physical therapy. Respiratory function (MIP, IME, affected/non-affected DT at rest/contraction, affected/non-affected DT thickness ratio) was measured by the inspiratory muscle training device PowerBreath K5 (2010, HaB International LtD, UK) at post-treatment (6 weeks). Significant between-group differences were found in some measures of respiratory function (MIP, IME, affected DT at contraction, affected DT thickness ratio), favoring IMT vs. no treatment.

The fair quality RCT (Chen et al., 2016) randomized patients with acute/subacute stroke to receive IMT or no treatment; both groups received conventional rehabilitation. Respiratory function (FVC, FEV1, ratio FEV1/FVC, MIP, MEP, MMEF, SpO2) was measured by standard spirometer and a finger pulse oximeter at post-treatment (10 weeks). A significant between-group difference was found in one measure of respiratory function (MIP), favoring IMT vs. no treatment.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that inspiratory muscle training is more effective than no treatment in improving respiratory function in patients with stroke. In addition, one fair quality RCT found a significant between-group difference in one measure of respiratory function, favoring inspiratory muscle training compared to no treatment.
DT: Diaphragm thickness IME: Inspiratory muscle endurance FVC: Forced Vital Capacity FEV1: Forced Expiratory Volume in 1 sec MIP: Maximal inspiratory pressure MEP: Maximal expiratory pressure MMEF: Maximal mid-expiratory flow SpO2: Resting oxyhemoglobin saturation.

Walking endurance
Not effective
1b

One high quality RCT (Cho et al., 2018) investigated the effect of inspiratory muscle training (IMT) on endurance in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive IMT or no treatment; both groups received conventional physical therapy. Walking endurance was measured by the 6-Minute Walk Test at post-treatment (6 weeks). No significant between-group difference was found.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that inspiratory muscle training is not more effective than no treatment in improving walking endurance in patients with stroke.

Phase not specific to one period - Multimodal intervention

Fatigue
Not effective
1b

One high quality RCT (Zedlitz et al., 2012) investigated the effect of a multimodal intervention on fatigue in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive cognitive therapy with graded activity training or cognitive therapy alone. Fatigue was measured by the Checklist Individual Strength (CIS: Fatigue) and the Fatigue Self-Observation List at post-treatment (3 months) and follow-up (6 months). There were no significant between-group differences on either measure at either time point.
Note: The authors noted a significant clinically relevant improvement in CIS: Fatigue scores at follow-up, for the cognitive therapy group with graded activity training.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that a multimodal intervention of cognitive therapy with graded activity training is not more effective than a comparison intervention (cognitive therapy alone) in reducing fatigue in patients with stroke.

Health-related quality of life
Not effective
1b

One high quality RCT (Zedlitz et al., 2012) investigated the effect of a multimodal intervention on health-related quality of life (HRQoL) in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive cognitive therapy with graded activity training or cognitive therapy alone. HRQoL was measured by the Stroke-Adapted Sickness Impact Profile at post-treatment (3 months) and follow-up (6 months). No significant between-group difference was found at either time point.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that a multimodal intervention of cognitive therapy with graded activity training is not more effective than a comparison intervention (cognitive therapy alone) in improving health-related quality of life in patients with stroke.

Mood and affect
Not effective
1b

One high quality RCT (Zedlitz et al., 2012) investigated the effect of a multimodal intervention on mood and affect in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive cognitive therapy with graded activity training or cognitive therapy alone. Mood and affect were measured by the Hospital Anxiety and Depression Scale (HADS: Anxiety, Depression) at post-treatment (3 months) and follow-up (6 months). No significant between-group differences were found at either time point.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that a multimodal intervention of cognitive therapy with graded activity training is not more effective than a comparison intervention (cognitive therapy alone) in improving mood and affect in patients with stroke.

Pain
Not effective
1b

One high quality RCT (Zedlitz et al., 2012) investigated the effect of a multimodal intervention on pain in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive cognitive therapy with graded activity training or cognitive therapy alone. Pain was measured by the Pain Self-Observation List at post-treatment (3 months) and follow-up (6 months). No significant between-group difference found at either time point.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that a multimodal intervention of cognitive therapy with graded activity training is not more effective than a comparison intervention (cognitive therapy alone) in reducing pain in patients with stroke.

Sleep quality
Not effective
1b

One high quality RCT (Zedlitz et al., 2012) investigated the effect of a multimodal intervention on sleep quality in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive cognitive therapy with graded activity training or cognitive therapy alone. Sleep quality was measured by the Sleep Quality Self-Observation List at post-treatment (3 months) and follow-up (6 months). No significant between-group difference was found at either time point.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that a multimodal intervention of cognitive therapy with graded activity training is not more effective than a comparison intervention (cognitive therapy alone) in improving sleep quality in patients with stroke.

Walking endurance
Effective
1b

One high quality RCT (Zedlitz et al., 2012) investigated the effect of a multimodal intervention on walking endurance in patients with stroke. This high quality RCT randomized patients with subacute/chronic stroke to receive cognitive therapy with graded activity training or cognitive therapy alone. Walking endurance was measured by the 6 Minute Walk Test at post-treatment (3 months) and follow-up (6 months). A significant between-group difference was found at post-treatment, favoring cognitive therapy with graded activity vs. cognitive therapy alone. This between-group difference remained significant at follow-up.

Conclusion: There is moderate evidence (Level 1b) from one high quality RCT that a multimodal intervention of cognitive therapy with graded activity training is more effective than a comparison intervention (cognitive therapy alone) in improving walking endurance in patients with stroke.

References

Acciarresi, M., Bogousslavsky, J., & Paciaroni. M. (2014). Post-stroke fatigue: epidemiology, clinical characteristics and treatment. European Neurology, 72, 255-61

Boehm, N., Muehlberg, H., & Stube, J.E. (2015). Managing poststroke fatigue using telehealth: a case report. American Journal of Occupational Therapy69(6), 6906350020p1-6906350020p7.
https://ajot.aota.org/article.aspx?articleid=2465091

Carlsson, G.E., Möller, A., & Blomstrand, C. (2003). Consequences of mild stroke in persons. Cerebrovascular Diseases