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.

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