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. 2021 Nov 23;11(11):CD001919.
doi: 10.1002/14651858.CD001919.pub4.

Information provision for stroke survivors and their carers

Thomas F Crocker  1 , Lesley Brown  1 , Natalie Lam  1 , Faye Wray  2 , Peter Knapp  3 , Anne Forster  2
Affiliations

Information provision for stroke survivors and their carers

Thomas F Crocker et al. Cochrane Database Syst Rev. .

Abstract

Background: A stroke is a sudden loss of brain function caused by lack of blood supply. Stroke can lead to death or physical and cognitive impairment and can have long lasting psychological and social implications. Research shows that stroke survivors and their families are dissatisfied with the information provided and have a poor understanding of stroke and associated issues.

Objectives: The primary objective is to assess the effects of active or passive information provision for stroke survivors (people with a clinical diagnosis of stroke or transient ischaemic attack (TIA)) or their identified carers. The primary outcomes are knowledge about stroke and stroke services, and anxiety.

Search methods: We updated our searches of the Cochrane Stroke Group Specialised Register on 28 September 2020 and for the following databases to May/June 2019: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 5) and the Cochrane Database of Systematic Reviews (CDSR; 2019, Issue 5) in the Cochrane Library (searched 31 May 2019), MEDLINE Ovid (searched 2005 to May week 4, 2019), Embase Ovid (searched 2005 to 29 May 2019), CINAHL EBSCO (searched 2005 to 6 June 2019), and five others. We searched seven study registers and checked reference lists of reviews.

Selection criteria: Randomised trials involving stroke survivors, their identified carers or both, where an information intervention was compared with standard care, or where information and another therapy were compared with the other therapy alone, or where the comparison was between active and passive information provision without other differences in treatment.

Data collection and analysis: Two review authors independently assessed trial eligibility and risk of bias, and extracted data. We categorised interventions as either active information provision or passive information provision: active information provision included active participation with subsequent opportunities for clarification and reinforcement; passive information provision provided no systematic follow-up or reinforcement procedure. We stratified analyses by this categorisation. We used GRADE methods to assess the overall certainty of the evidence.

Main results: We have added 12 new studies in this update. This review now includes 33 studies involving 5255 stroke-survivor and 3134 carer participants. Twenty-two trials evaluated active information provision interventions and 11 trials evaluated passive information provision interventions. Most trials were at high risk of bias due to lack of blinding of participants, personnel, and outcome assessors where outcomes were self-reported. Fewer than half of studies were at low risk of bias regarding random sequence generation, concealment of allocation, incomplete outcome data or selective reporting. The following estimates have low certainty, based on the quality of evidence, unless stated otherwise. Accounting for certainty and size of effect, analyses suggested that for stroke survivors, active information provision may improve stroke-related knowledge (standardised mean difference (SMD) 0.41, 95% confidence interval (CI) 0.17 to 0.65; 3 studies, 275 participants), may reduce cases of anxiety and depression slightly (anxiety risk ratio (RR) 0.85, 95% CI 0.68 to 1.06; 5 studies, 1132 participants; depression RR 0.83, 95% CI 0.68 to 1.01; 6 studies, 1315 participants), may reduce Hospital Anxiety and Depression Scale (HADS) anxiety score slightly, (mean difference (MD) -0.73, 95% CI -1.10 to -0.36; 6 studies, 1171 participants), probably reduces HADS depression score slightly (MD (rescaled from SMD) -0.8, 95% CI -1.27 to -0.34; 8 studies, 1405 participants; moderate-certainty evidence), and may improve each domain of the World Health Organization Quality of Life assessment short-form (WHOQOL-BREF) (physical, MD 11.5, 95% CI 7.81 to 15.27; psychological, MD 11.8, 95% CI 7.29 to 16.29; social, MD 5.8, 95% CI 0.84 to 10.84; environment, MD 7.0, 95% CI 3.00 to 10.94; 1 study, 60 participants). No studies evaluated positive mental well-being. For carers, active information provision may reduce HADS anxiety and depression scores slightly (MD for anxiety -0.40, 95% CI -1.51 to 0.70; 3 studies, 921 participants; MD for depression -0.30, 95% CI -1.53 to 0.92; 3 studies, 924 participants), may result in little to no difference in positive mental well-being assessed with Bradley's well-being questionnaire (MD -0.18, 95% CI -1.34 to 0.98; 1 study, 91 participants) and may result in little to no difference in quality of life assessed with a 0 to 100 visual analogue scale (MD 1.22, 95% CI -7.65 to 10.09; 1 study, 91 participants). The evidence is very uncertain (very low certainty) for the effects of active information provision on carers' stroke-related knowledge, and cases of anxiety and depression. For stroke survivors, passive information provision may slightly increase HADS anxiety and depression scores (MD for anxiety 0.67, 95% CI -0.37 to 1.71; MD for depression 0.39, 95% CI -0.61 to 1.38; 3 studies, 227 participants) and the evidence is very uncertain for the effects on stroke-related knowledge, quality of life, and cases of anxiety and depression. For carers, the evidence is very uncertain for the effects of passive information provision on stroke-related knowledge, and HADS anxiety and depression scores. No studies of passive information provision measured carer quality of life, or stroke-survivor or carer positive mental well-being.

Authors' conclusions: Active information provision may improve stroke-survivor knowledge and quality of life, and may reduce anxiety and depression. However, the reductions in anxiety and depression scores were small and may not be important. In contrast, providing information passively may slightly worsen stroke-survivor anxiety and depression scores, although again the importance of this is unclear. Evidence relating to carers and to other outcomes of passive information provision is generally very uncertain. Although the best way to provide information is still unclear, the evidence is better for strategies that actively involve stroke survivors and carers and include planned follow-up for clarification and reinforcement.

Trial registration: ClinicalTrials.gov NCT00415389 NCT00126295 NCT02202330 NCT02123875 NCT00264745 NCT01275495 NCT01836354 NCT00958607 NCT02080910 NCT00355147 NCT02121327 NCT02712385 NCT02354040 NCT01027273 NCT02112955 NCT01085240 NCT01980641 NCT00431821 NCT01062243 NCT02591511 NCT03034330 NCT00178529 NCT02444715 NCT01770184 NCT02132364 NCT02140619 NCT02140658 NCT02834273 NCT02681146 NCT03228979 NCT02807012 NCT02398409 NCT02569099 NCT02769871.

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Conflict of interest statement

Thomas F Crocker

  1. Grants and contracts: Development and evaluation of strategies to provide longer‐term health and social care for stroke survivors and their carers, RP‐PG‐0611‐20010, National Institute for Health Research (paid to institution).

Lesley Brown

  1. Grants and contracts: contributed to the protocol for 'Development and evaluation of strategies to provide longer‐term health and social care for stroke survivors and their carers', National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP‐PG‐0611‐20010) (paid to Bradford Teaching Hospitals NHS Foundation Trust).

Natalie Lam: none known.

Faye Wray: none known.

Peter Knapp: none known.

Anne Forster

  1. Grants and contracts: undertaken many research projects which include components of information provision for people after stroke, Department of Health; Stroke Association; NIHR (paid to institution).

  2. Published opinions in medical journals, the public press, broadcast and social media relevant to the interventions in the work: Reported research and commented on information provision for people after stroke, University of Leeds and Bradford Teaching Hospitals NHS Foundation Trust (www.journalslibrary.nihr.ac.uk/pgfar/pgfar02060/#/abstract).

  3. Any affiliation to an organisation (including not‐for‐profit) that has a declared opinion or position on the topic: undertake review activities, liaise regarding research, Stroke Association.

  4. Declaring involvement in eligible studies:

    1. Smith J, Forster A, Young J. A randomized trial to evaluate an education programme for patients and caregivers after stroke. Clinical Rehabilitation 2004;18(7):726‐36. Funding: Northern and Yorkshire Region Research and Development UK

    2. Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J; the TRACS Trial Collaboration. A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster‐randomised controlled trial and cost‐effectiveness analysis. Lancet 2013;382(9910):2069‐76. [DOI: 10.1016/ S0140‐6736(13)61603‐7] [PMID: 24054816]. Funding: Medical Research Council (MRC) UK

Figures

1
1
Study flow diagram for this update
2
2
Risk of bias summary
1.1
1.1. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 1: Stroke‐survivor knowledge of stroke and stroke services (SMD)
1.3
1.3. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 3: Stroke‐survivor anxiety (dichotomised data)
1.4
1.4. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 4: Sensitivity analysis. Stroke‐survivor anxiety (dichotomised data)
1.5
1.5. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 5: Stroke‐survivor anxiety (HADS‐A)
1.7
1.7. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 7: Stroke‐survivor depression (dichotomised data)
1.8
1.8. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 8: Sensitivity analysis. Stroke‐survivor depression (dichotomised data)
1.9
1.9. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 9: Stroke‐survivor depression (SMD)
1.11
1.11. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 11: Stroke‐survivor satisfaction with information on causes and nature of stroke (dichotomised data)
1.12
1.12. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 12: Stroke‐survivor satisfaction with information about allowances and services (dichotomised data)
1.13
1.13. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 13: Stroke‐survivor psychological distress (SMD)
1.15
1.15. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 15: Stroke‐survivor locus of control (SMD)
1.17
1.17. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 17: Stroke‐survivor activities of daily living (Barthel Index, 0‐20)
1.19
1.19. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 19: Stroke‐survivor social activities (SMD)
1.21
1.21. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 21: Stroke‐survivor perceived health status (EQ‐VAS)
1.22
1.22. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 22: Stroke‐survivor perceived health status (SF‐36)
1.24
1.24. Analysis
Comparison 1: Active information provision vs control for stroke survivors, Outcome 24: Stroke‐survivor deaths
2.1
2.1. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 1: Carer knowledge of stroke and stroke services (SMD)
2.2
2.2. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 2: Carer anxiety (dichotomised data)
2.3
2.3. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 3: Sensitivity analysis. Carer anxiety (dichotomised data)
2.4
2.4. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 4: Carer anxiety (HADS‐A)
2.5
2.5. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 5: Carer depression (dichotomised data)
2.6
2.6. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 6: Sensitivity analysis. Carer depression (dichotomised data)
2.7
2.7. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 7: Carer depression (HADS‐D)
2.10
2.10. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 10: Carer satisfaction with information about recovery and rehabilitation (dichotomised data)
2.11
2.11. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 11: Carer satisfaction with information about allowances and services (dichotomised data)
2.12
2.12. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 12: Carer psychological distress (dichotomised data)
2.13
2.13. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 13: Carer psychological distress (SMD)
2.14
2.14. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 14: Carer burden (SMD)
2.16
2.16. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 16: Carer social activities (FAI)
2.17
2.17. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 17: Carer perceived health status (QALYs for year post‐stroke)
2.18
2.18. Analysis
Comparison 2: Active information provision vs control for stroke carers, Outcome 18: Carer perceived health status (EQ‐VAS)
4.1
4.1. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 1: Stroke‐survivor knowledge of stroke and stroke services (SMD)
4.2
4.2. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 2: Stroke‐survivor anxiety (dichotomised data)
4.3
4.3. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 3: Stroke‐survivor anxiety (HADS‐A)
4.4
4.4. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 4: Stroke‐survivor depression (dichotomised data)
4.5
4.5. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 5: Stroke‐survivor depression (HADS‐D)
4.6
4.6. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 6: Stroke‐survivor quality of life (COOP charts: quality of life)
4.7
4.7. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 7: Stroke‐survivor satisfaction with information about the causes and nature of stroke
4.8
4.8. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 8: Stroke‐survivor satisfaction with information about allowances and services
4.9
4.9. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 9: Stroke‐survivor psychological distress (SMD)
4.11
4.11. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 11: Stroke‐survivor independence in activities of daily living (Barthel Index, 0‐20)
4.13
4.13. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 13: Stroke‐survivor perceived health status (COOP charts: overall health)
4.15
4.15. Analysis
Comparison 4: Passive information provision vs control for stroke survivors, Outcome 15: Stroke‐survivor deaths
See this image and copyright information in PMC

Update of

References

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    1. Kim JI, Lee S, Kim JH. Effects of a web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study. Health Education Research 2013;28(3):488-501. [DOI: 10.1093/her/cyt044] [PMID: ] - DOI - PubMed
Kuo 2015 {published data only}
    1. Kuo Y-W, Yen M, Fetzer S, Chiang L-C, ShyuY-IL, Lee T-H, et al. A home-based training programme improves family caregivers’ oral care practices with stroke survivors: a randomized controlled trial. International Journal of Dental Hygiene 2016;14(2):82-91. [DOI: 10.1111/idh.12138] - DOI - PubMed
    1. Kuo Y-W, Yen M, Fetzer S, Lee J-D, Chiang L-C. Effect of family caregiver oral care training on stroke survivor oral and respiratory health in Taiwan: a randomised controlled trial. Community Dental Health 2015;32(3):137-42. [DOI: 10.1922/CDH_3572Kuo06] [PMID: ] - DOI - PubMed
Larson 2005 {published data only}
    1. Larson J, Franzen-Dahlin A, Billing E, Arbin M, Murray V, Wredling R. The impact of a nurse-led support and education programme for spouses of stroke patients: a randomised controlled trial. Journal of Clinical Nursing 2005;14:995-1003. - PubMed
Lomer 1987 {published data only}
    1. Lomer M, McLellan DL. Informing hospital patients and their relatives about stroke. International Journal of Rehabilitation Research 1986;9(1):103-4.
    1. Lomer M, McLellen DL. Informing hospital patients and their relatives about stroke. Clinical Rehabilitation 1987;1:33-7.
Lowe 2007 {published and unpublished data}ISRCTN55373356
    1. Lowe D, Leathley M, Sharma AK. An assessment of the utility of an individualised information booklet in patients after stroke. Age and Ageing 2005;34 Suppl 1:i38. - PubMed
    1. Lowe D, Leathley M, Sharma AK. Assessment of stroke knowledge. Age and Ageing 2002;31 Suppl 1:42.
    1. Lowe D, Leathley M, Sharma AK. Patient education following stroke: the CareFile Project. Cerebrovascular Diseases 2002;13 Suppl 3:81.
    1. Lowe D, Leathley M, Sharma AK. The effects of an individualised information booklet in post-stroke patients: the CareFile Project. Cerebrovascular Diseases 2003;14 Suppl 4:95.
    1. Lowe D, Sharma A, Leathley M. The CareFile project: a feasibility study to examine the effects of an individualised information booklet on patients after stroke. Age and Ageing 2007;36:83-9. - PubMed
Maasland 2007 {published data only}
    1. Maasland E, Koudstaal PJ, Habbema JD, Dippel DW. Effects of an individualised multimedia computer programme for health education in patients with a recent minor stroke or transient ischemic attack - a randomized controlled trial. Acta Neurologica Scandinavica 2007;115:41-8. - PubMed
Mant 1998 {published and unpublished data}
    1. Mant J, Carter J, Wade DT, Winner S. The impact of an information pack on patients with stroke and their caregivers: a randomized controlled trial. Clinical Rehabilitation 1998;12:465-76. - PubMed
Mudzi 2012 {published data only}
    1. Mudzi W, Stewart A, Connor M, Becker P, Musenge E. The effect of caregiver education on the quality of life of stroke survivors and their caregivers. Physiotherapy 2011;97 Suppl 1:eS849. [DOI: 10.1016/j.physio.2011.04.002] - DOI
    1. Mudzi W, Stewart A, Musenge E. Caregiver strain and associated factors 12 months post stroke: impact of caregiver education. Physiotherapy 2015;101(Suppl 1):eS1055. [DOI: 10.1016/j.physio.2015.03.1935] - DOI
    1. Mudzi W, Stewart A, Musenge E. Effect of caregiver education on functional abilities of patients with stroke. International Journal of Therapy and Rehabilitation 2012;19(7):380-5. [DOI: 10.12968/ijtr.2012.19.7.380] - DOI
O'Connell 2009 {published and unpublished data}
    1. O'Connell B, Hawkins M, Botti M, Buchbinder R, Baker L. Providing information to stroke survivors: lessons from a failed randomised controlled trial. Journal of the Australasian Rehabilitation Nurses' Association 2009;12:4-6.
Pain 1990 {published data only}
    1. Pain HS, McLellan DL. The use of individualised booklets after a stroke. Clinical Rehabilitation 1990;4:265-72.
Rodgers 1999 {published and unpublished data}ISRCTN63480886
    1. Atkinson C, Curless RH, Bond S, Suddes M, Dobson R, Rodgers H. Randomised controlled trial of a comprehensive stroke education programme for patients and caregivers. In: Proceedings of The Challenge of Stroke. The Lancet Conference. Montreal, Canada. October 1998.
    1. Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R. Randomised controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke 1999;30:2585-91. - PubMed
    1. Rodgers H, Curless R, Bond S, Suddes M. A randomised trial of a comprehensive stroke information service for patients and caregivers. Report to Northern and Yorkshire NHS Executive Unpublished. [Project Number: HSR/067]
Smith 2004 {published and unpublished data}ISRCTN41666882
    1. Smith J, Forster A, Young J. A randomized trial to evaluate an education programme for patients and caregivers after stroke. Clinical Rehabilitation 2004;18(7):726-36. - PubMed

References to studies excluded from this review

Aben 2012 {published data only}
    1. Aben L, Heijenbrok-Kal M, Ponds R, Van Busschbach J, Ribbers G. Long term effects of a memory self-efficacy training program for stroke patients in the chronic stage: a randomized controlled trial. Brain Injury 2012;26(4-5):414-5.
    1. Aben L, Heijenbrok-Kal MH, Loon EM, Groet E, Ponds RW, Busschbach JJ, et al. Training memory self-efficacy in the chronic stage after stroke: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation 2011;92(10):1712-3. [CENTRAL: CN-01005633] - PubMed
    1. Aben L, Heijenbrok-Kal MH, Ponds RW, Busschbach JJ, Ribbers GM. Long-lasting effects of a new memory self-efficacy training for stroke patients: a randomized controlled trial. Neurorehabilitation and Neural Repair 2014;28(3):199-206. [DOI: 10.1177/1545968313478487] - DOI - PubMed
    1. Aben L, Heijenbrok-Kal MH, Loon EM, Groet E, Ponds RW, Busschbach JJ, et al. Training memory self-efficacy in the chronic stage after stroke: a randomized controlled trial. Neurorehabilitation and Neural Repair 2013;27(2):110-7. [DOI: 10.1177/1545968312455222] - DOI - PubMed
    1. Aben L, Ribbers GM, Busschbach JJ, Ponds R. Is unstructured peer support after stroke sufficient to improve quality of life? Archives of Physical Medicine and Rehabilitation 2014;95(10):e8. [CENTRAL: CN-01023495]
Ab Malik 2017 {published data only}
    1. Ab Malik N, Mohamad Yatim S, Lam OL, Jin L, McGrath CP. Effectiveness of a web-based health education program to promote oral hygiene care among stroke survivors: randomized controlled trial. Journal of Medical Internet Research 2017;19(3):e87. [DOI: 10.2196/jmir.7024] [PMID: ] - DOI - PMC - PubMed
ACTRN12618001066279 {published data only}ACTRN12618001066279
    1. ACTRN12618001066279. Improving smartphone use after stroke. [A comparison of systematic instruction and error-based techniques to train the use of smartphone memory apps in stroke survivors: a phase II RCT]. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12618001066279 (first received 24 June 2018).
Adie 2010 {published data only}
    1. Adie K, James M. Does telephone follow-up improve blood pressure after minor stroke or TIA? Age and Ageing 2010;39(5):598-603. - PubMed
Allen 2009 {published data only}
    1. Allen K, Hazelett S, Jarjoura D, Hua K, Wright K, Weinhardt J, et al. A randomized trial testing the superiority of a postdischarge care management model for stroke survivors. Journal of Stroke and Cerebrovascular Diseases 2009;18:443-52. - PMC - PubMed
Andersen 2002 {published data only}
    1. Andersen HE, Eriksen K, Brown A, Schultz-Larsen K, Forchhammer BE. Follow-up services for stroke survivors after hospital discharge - a randomized control study. Clinical Rehabilitation 2002;16(6):593-603. - PubMed
ATTEND 2017 {published data only}CTRI/2013/04/003557
    1. ATTEND Collaborative Group. Family-led rehabilitation after stroke in India (ATTEND): a randomised controlled trial. Lancet 2017;390(10094):588-99. [DOI: 10.1016/S0140-6736(17)31447-2] [PMID: ] - DOI - PubMed
    1. NCT02123875. ATTEND-family-led rehabilitation after stroke in India. clinicaltrials.gov/ct2/show/record/NCT02123875 (first received 11 April 2014).
Bacchini 2011 {published data only}
    1. Bacchini M, Rovacchi C, Chiampo F, Rossi, M. Gait analysis outcome following re-education in patients poststroke. Gait and Posture 2011;33:S53-4.
Bakas 2008 {published data only}
    1. Bakas T, Farran C, Austin J, Given B, Johnson E, Williams L. Stroke caregiver outcomes from the Telephone Assessment and Skill-Building Kit (TASK). Topics in Stroke Rehabilitation 2009;16(2):105-21. - PMC - PubMed
    1. Bakas T, Farran C, Austin J, Given B, Perkins S, Johnson E, et al. Stroke caregiver outcomes from the Telephone Assessment and Skill-building Kit (TASK). Stroke 2008;39(2):550. - PMC - PubMed
Bakas 2015 {published data only}
    1. Bakas T, Austin JK, Habermann B, Jessup NM, McLennon SM, Mitchell PH, et al. Telephone assessment and skill-building kit for stroke caregivers: a randomized controlled clinical trial. Stroke 2015;46(12):3478-87. [DOI: 10.1161/STROKEAHA.115.011099] [PMID: ] - DOI - PMC - PubMed
Ballard 2013 {published data only}
    1. Ballard KA, Carmany K, Hazelett S. Does stroke education including post discharge telephone support improve stroke recognition and need to call 911? Stroke 2013;44 Suppl 1:ATP344.
Battersby 2009 {published data only}
    1. Battersby M, Hoffmann S, Cadilhac D, Osborne R, Lalor E, Lindley R. Getting your life back on track after stroke: a phase II multi-centered, single-blind, randomized, controlled trial of the Stroke Self-Management Program vs. the Stanford Chronic Condition Self-Management Program or standard care in stroke survivors. International Journal of Stroke 2009;4(2):137-44. - PubMed
    1. Cadilhac DA, Hoffmann S, Kilkenny M, Lindley R, Lalor E, Osborne RH, et al. A phase II multicentered, single-blind, randomized, controlled trial of the stroke self-management program. Stroke 2011;42(6):1673-9. - PubMed
Bishop 2014 {published data only}
    1. Bishop D, Miller I, Weiner D, Guilmette T, Mukand J, Feldmann E, et al. Family Intervention: Telephone Tracking (FITT): a pilot stroke outcome study. Topics in Stroke Rehabilitation 2014;21 Suppl 1:S63-S74. [DOI: 10.1310/tsr21S1-S63] [PMID: ] - DOI - PubMed
Blanton 2019 {published data only}
    1. Blanton S, Clark PC, Lyles RH, Cotsonis G, Jones BD, Reiss A, et al. A web-based carepartner-integrated rehabilitation program for persons with stroke: study protocol for a pilot randomized controlled trial. Pilot & Feasibility Studies 2019;5:58. [DOI: 10.1186/s40814-019-0439-0] - DOI - PMC - PubMed
Boden‐Albala 2019 {published data only}
    1. Boden-Albala B, Goldmann E, Parikh NS, Carman H, Roberts ET, Lord AS, et al. Efficacy of a discharge educational strategy vs standard discharge care on reduction of vascular risk in patients with stroke and transient ischemic attack: The DESERVE randomized clinical trial. JAMA Neurology 2019;76(1):20-7. [DOI: 10.1001/jamaneurol.2018.2926] - DOI - PMC - PubMed
    1. Braune I, Kudrin B, Wysota C, Humayun A, Goldmann E, Parikh NS, et al. Using qualitative analysis to explore the themes of follow-up calls to discharged stroke patients. Stroke 2018;49 Suppl 1:AWP312. [DOI: 10.1161/str.49.suppl_1.WP312] - DOI
    1. Hyun Park J, Goldmann E, Parikh N S, Appleton N, Boden-Albala B. Factors associated with medication knowledge among stroke survivors. Stroke 2018;49 Suppl 1:AWP174. [DOI: 10.1161/str.49.suppl_1.WP174] - DOI
    1. Khan B, Goldmann E, Parikh N, Appleton N, Boden-Albala B. Previous stroke/TIA history is associated with low medication adherence in a multi-ethnic cohort of stroke survivors. Stroke 2018;49 Suppl 1:ATP177. [DOI: 10.1161/str.49.suppl_1.TP177] - DOI
    1. Lord AS, Carman HM, Roberts ET, Torrico V, Goldmann E, Ishida K, et al. Discharge educational strategies for reduction of vascular events (DESERVE): design and methods. International Journal of Stroke 2015;10 Suppl A100:151-4. [DOI: 10.1111/ijs.12571] [PUBMED CENTRAL: PMC5015850] [PMID: ] - DOI - PMC - PubMed
Boehme 2018 {published data only}
    1. Boehme C, Toell T, Mayer L, Krebs S, Ferrari J, Pechlaner R, et al. Post-stroke disease management - STROKE CARD: baseline characteristics of 1730 patients in a randomized controlled trial and current literature on secondary stroke prevention. European Stroke Journal 2018;3 Suppl 1:595.
Boter 2004 {published data only}
    1. Boter H. Multicenter randomized controlled trial of an outreach nursing support program for recently discharge stroke patients. Stroke 2004;35(12):2867-72. - PubMed
Boysen 2009 {published data only}
    1. Boysen G, Krarup L, Zeng X, Zeng X, Oskedra A, Korv J, et al. ExStroke pilot trial of the effect of repeated instructions to improve physical activity after ischaemic stroke: a multinational randomised controlled clinical trial. BMJ 2009;339:b2810. - PMC - PubMed
Brotons 2011 {published data only}
    1. Brotons C, Soriano N, Moral I, Rodrigo MP, Kloppe P, Rodriguez AI, et al. Randomized clinical trial to assess the efficacy of a comprehensive programme of secondary prevention of cardiovascular disease in general practice: the PREseAP study. Revista Espanola de Cardiologia 2011;64(1):13-20. - PubMed
Burton 2005 {published data only}
    1. Burton C, Gibbon B. Expanding the role of the stroke nurse: a pragmatic clinical trial. Journal of Advanced Nursing 2005;52:640-50. - PubMed
Byers 2010 {published data only}
    1. Byers A, Lamanna L, Rosenberg A. Enhanced stroke education using motivational interviewing increases patient knowledge and satisfaction after discharge from an acute care setting. Canadian Journal of Neuroscience Nursing 2010;32(1):22.
Cameron 2015 {published data only}
    1. Cameron JI, Naglie G, Green T, Gignac MA, Bayley M, Huijbregts M, et al. The Timing It Right Stroke Family Support Program: phase 2 pilot randomized controlled trial. Cerebrovascular Diseases 2011;31 Suppl 2:42.
    1. Cameron JI, Naglie G, Green TL, Gignac MA, Bayley M, Huijbregts M, et al. A feasibility and pilot randomized controlled trial of the "Timing it Right Stroke Family Support Program". Clinical Rehabilitation 2015;29(11):1129-40. [DOI: 10.1177/0269215514564897] [PMID: ] - DOI - PubMed
Chaiyawat 2009 {published data only}
    1. Chaiyawat P, Kulkantrakorn K, Sritipsukho P. Effectiveness of home rehabilitation for ischemic stroke. Neurology International 2009;1(1):e10. - PMC - PubMed
Chang 2000 {published data only}
    1. ChangT, Li I. The effect of social support intervention on home-bound stroke patients' physical and mental health in the Ilan area. Journal of Nursing Research (China) 2000;8(4):423-34.
Chang 2011 {published data only}
    1. Chang K, Zhang H, Xia Y, Chen C. Testing the effectiveness of knowledge and behavior therapy in patients of hemiplegic stroke. Topics in Stroke Rehabilitation 2011;18(5):525-35. - PubMed
Cheng 2011 {published data only}
    1. Cheng EM, Cunningham WE, Towfighi A, Sanossian N, Bryg RJ, Anderson TL. Randomized, controlled trial of an intervention to enable stroke survivors throughout the Los Angeles County safety net to "stay with the guidelines". Circulation: Cardiovascular Quality and Outcomes 2011;4:229-34. - PMC - PubMed
Cheng 2015 {published data only}
    1. Cheng HY, Chair SY, Chau JPC. Effects of a psychoeducational program to enhance Chinese family caregivers' psychosocial wellbeing, problem-solving abilities, and to enable stroke survivors to remain in their homes. Cerebrovascular Diseases 2015;39 Suppl 2:90. [DOI: 10.1159/000431011] - DOI
    1. NCT02080910. A psychoeducational intervention for stroke family caregivers [The effects of a psychoeducational intervention on stroke family caregiver outcomes and the use of health and social services among stroke survivors: a randomized controlled trial]. clinicaltrials.gov/ct2/show/record/NCT02080910 (first received 7 March 2014).
Christie 1984 {published data only}
    1. Christie D, Weigall D. Social work effectiveness in two-year stroke survivors: a randomised controlled trial. Community Health Studies 1984;8:26-32. - PubMed
Chumbler 2011 {published data only}
    1. Chumbler NR, Roudebush RL, Morey MC, Griffiths P, Quigley P, Rose DK, et al. The effects of a stroke telerehabilitation in-home intervention on function and disability: preliminary results of a randomized clinical trial. Stroke 2011;42(3):e76-7.
Claiborne 2006 {published data only}
    1. Claiborne N. Effectiveness of a care coordination model for stroke survivors: a randomized study. Health and Social Work 2006;31(2):87-96. - PubMed
Clark 2003 {published data only}
    1. Clark MS, Rubenach S, Winsor A. A randomized controlled trial of an education and counselling intervention for families after stroke. Clinical Rehabilitation 2003;17(7):703-12. - PubMed
Clarke 2011 {published data only}
    1. Clarke A, Barker-Collo SL, Feigin VL. Educational group treatment for post-stroke fatigue: a randomised pilot trial. Brain Impairment 2011;12:63.
    1. Clarke A, Barker-Collo SL, Feigin VL. Poststroke fatigue: does group education make a difference? A randomized pilot trial. Topics in Stroke Rehabilitation 2012;19(1):32-9. - PubMed
Damush 2011 {published data only}
    1. Damush TM, Ofner S, Yu Z, Plue L, Nicholas G, Williams LS. Implementation of a stroke self-management program: a randomized controlled pilot study of veterans with stroke. Translational Behavioral Medicine 2011;1(4):561-72. [DOI: 10.1007/s13142-011-0070-y] [PMID: ] - DOI - PMC - PubMed
Damush 2016 {published data only}
    1. Damush TM, Myers L, Anderson JA, Yu Z, Ofner S, Nicholas G, et al. The effect of a locally adapted, secondary stroke risk factor self-management program on medication adherence among veterans with stroke/TIA. Translational Behavioral Medicine 2016;6(3):457-68. [DOI: 10.1007/s13142-015-0348-6] [PMID: ] - DOI - PMC - PubMed
    1. Damush TM. Adapting tools to implement stroke risk management to veterans (TOOLS). clinicaltrials.gov/ct2/show/NCT00355147?term=TOOLS&rank=1 (accessed November 2011).
Dennis 1997 {published data only}
    1. Dennis M, O'Rourke S, Slattery J, Staniforth T, Warlow C. Evaluation of a stroke family care worker: results of a randomised controlled trial. BMJ 1997;314:1071-7. - PMC - PubMed
    1. Dennis M, O'Rourke S, Staniforth T, Warlow C. Evaluation of a stroke family care worker: a randomised controlled trial. Cerebrovascular Diseases 1996;6 Suppl 2:17. - PMC - PubMed
    1. O'Rourke SJ, Dennis MS, Slattery J, Warlow CP. Preliminary results from a randomised trial of a stroke family care worker; patients outcome six months post stroke. Age and Ageing 1996;25 Suppl 1:32.
Desrosiers 2007 {published data only}
    1. Desrosiers J, Noreau L, Rochette A, Carbonneau H, Fontaine L, Viscogliosi C, et al. A home leisure education program may reduce depression after a stroke. Stroke 2007;38(2):473-4. - PubMed
    1. Desrosiers J, Noreau L, Rochette A, Viscogliosi C, Bravo G. Effect of a home leisure education program after stroke: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation 2007;88(9):1095-100. - PubMed
Dongbo 2003 {published data only}
    1. Dongbo F, Hua F, McGowan P, Yie S, Lizhen Z, Huiqin Y, et al. Implementation and quantitative evaluation of chronic disease self-management programme in Shanghai, China: randomized controlled trial. Bulletin of the World Health Organization 2003;81:3. - PMC - PubMed
Dromerick 2011 {published data only}
    1. Dromerick AW, Gibbons MC, Edwards DF, Farr DE, Giannetti ML, Sánchez B, et al. Preventing recurrence of thromboembolic events through coordinated treatment in the District of Columbia. International Journal of Stroke 2011;6(5):454-60. [DOI: 10.1111/j.1747-4949.2011.00654.x] [PUBMED CENTRAL: PMC3474334] [PMID: ] - DOI - PMC - PubMed
    1. Dromerick AW. Preventing Recurrence Of Thromboembolic Events through Coordinated Treatment in the District of Columbia (PROTECT DC). clinicaltrials.gov/ct2/show/NCT00703274?term=PROTECT+DC&rank=1 (accessed November 2011). - PMC - PubMed
Ertel 2007 {published data only}
    1. Ertel K, Glymour M, Glass T, Berkman L. Frailty modifies effectiveness of psychosocial intervention in recovery from stroke. Clinical Rehabilitation 2007;21(6):511-2. - PubMed
Faulkner 2011 {published data only}
    1. Faulkner J. The effect of an exercise and education programme on transient ischaemic attack and non-disabling stroke: a randomised controlled pilot trial. cochranelibrary-wiley.com/o/cochrane/clcentral/articles/128/CN-01015128/... 2011. [CENTRAL: CN-01015128]
Faulkner 2017 {published data only}
    1. Faulkner J, Stoner L, Lanford J, Jolliffe E, Mitchelmore A, Lambrick D. Long-term effect of participation in an early exercise and education program on clinical outcomes and cost implications, in patients with TIA and minor, non-disabling stroke. Translational Stroke Research 2017;8(3):220-7. [DOI: 10.1007/s12975-016-0510-6] [PMID: ] - DOI - PubMed
Feld‐Glazman 2012 {published data only}
    1. Feld-Glazman R, Bushnik T, Lew S, Sheikovitz L. Poster 87 The impact of a stroke education program on Patient's stroke knowledge and their change of stroke risk behaviors. Archives of Physical Medicine and Rehabilitation 2012;93(10):e39. [DOI: 10.1016/j.apmr.2012.08.122] - DOI
Forster 1996 {published and unpublished data}
    1. Dowswell G, Lawler J, Young J, Forster A, Hearn J. A qualitative study of specialist nurse support for stroke patients and care-givers at home. Clinical Rehabilitation 1997;11:283-301. - PubMed
    1. Forster A, Young J. Specialist nurse support of patients with stroke in the community: a randomised controlled trial. BMJ 1996;312:1642-6. - PMC - PubMed
Friedland 1992 {published data only}
    1. Friedland J, McColl M. Social support for stroke survivors: development and evaluation of an intervention programme. Physical and Occupational Therapy in Geriatrics 1989;7(3):55-69.
    1. Friedland JF, McColl M. Social support intervention after stroke: results of a randomised trial. Archives of Physical Medicine and Rehabilitation 1992;73:573-81. - PubMed
Fukuoka 2015 {published data only}CN‐00991246
    1. Fukuoka Y, Hosomi N, Hyakuta T, Omori T, Ito Y, Uemura J, et al. Baseline feature of a randomized trial assessing the effects of disease management programs for the prevention of recurrent ischemic stroke. Journal of Stroke and Cerebrovascular Diseases 2015;24(3):610-7. [DOI: 10.1016/j.jstrokecerebrovasdis.2014.10.007] - DOI - PubMed
    1. Moriyama M. Construction of a self-management patient education program and evidences for preventing recurrence of stroke in community settings. Cochrane Central Register of Controlled Trials 2012;2014(6):CN-00991246.
    1. NCT02121327. The effects of disease management programs for prevention of recurrent ischemic stroke [Disease Management Program (DMP) stroke trial]. clinicaltrials.gov/ct2/show/record/NCT02121327 (first received 15 January 2014).
Gillham 2010 {published data only}
    1. Gillham S, Endacott R. Impact of enhanced secondary prevention on health behaviour in patients following minor stroke and transient ischaemic attack: a randomized controlled trial. Clinical Rehabilitation 2010;24(9):822-30. - PubMed
Glass 2004 {published data only}
    1. Glass T, Berkman L, Hiltunen E, Furie K, Glymour M, Fay M, et al. The Families In Recovery from Stroke Trial (FIRST): primary study results. Psychosomatic Medicine 2004;66(6):889-97. - PubMed
Goldberg 1997 {published data only}
    1. Goldberg G, Segal ME, Berk SN, Schall RR, Gershkoff AM. Stroke transition after inpatient rehabilitation. Topics in Stroke Rehabilitation 1997;4:64-79. - PubMed
Gorman 2015 {published data only}
    1. Gorman B, Rowell M. The essence of stroke educators: standardizing stroke education to optimize patient/family perceptions and understanding of stroke information. Stroke 2015;46 Suppl 1:ATP353.
Grant 2002 {published data only}
    1. Grant JS, Elliott TR, Weaver M, Bartolucci AA, Giger JN. Telephone intervention with family caregivers of stroke survivors after rehabilitation. Stroke 2002;38(8):2060-5. - PubMed
Grasel 2006 {published data only}
    1. Grasel E, Schmidt R, Biehler J, Schupp W. Long-term effects of the intensification of the transition between inpatient neurological rehabilitation and home care of stroke patients. Clinical Rehabilitation 2006;20(7):577-83. - PubMed
Graven 2008 {published data only}ACTRN12608000042347
    1. Graven C, Brock K, Hill K, Ames D, Cotton S, Joubert L. From rehabilitation to recovery: protocol for a randomised controlled trial evaluating a goal-based intervention to reduce depression and facilitate participation post-stroke. BMC Neurolgy 2011;11:73. - PMC - PubMed
    1. Graven C, Brock K, Hill KD, Cotton S, Joubert L. First year after stroke: an integrated approach focusing on participation goals aiming to reduce depressive symptoms. Stroke 2016;47(11):2820-7. [DOI: 10.1161/STROKEAHA.116.013081] [PMID: ] - DOI - PubMed
Green 2007 {published data only}
    1. Green T, Haley E, Eliasziw M, Hoyte K. Education in stroke prevention: efficacy of an educational counselling intervention to increase knowledge in stroke survivors. Canadian Journal of Neuroscience Nursing 2007;29(2):13-20. - PubMed
Habibzadeh 2007 {published data only}
    1. Habibzadeh H, Gofranipoor F, Ahmadi F. A study on the effect of self care plan on activity daily living status in patient with cerebrovascular accident. Journal of Medical Sciences 2007;7(1):126-30.
Hackett 2013 {published data only}
    1. Hackett ML, Carter G, Crimmins D, Clarke T, Arblaster L, Billot L, et al. ImProving Outcomes after STroke (POST): results from the randomized clinical pilot trial. International Journal of Stroke 2013;8(8):707-10. [DOI: 10.1111/j.1747-4949.2012.00913.x] [PMID: ] - DOI - PubMed
    1. Hackett ML, Carter G, Crimmins D, Clarke T, Maddock K, Sturm JW. imProving Outcomes after STroke clinical pilot trial protocol (POST). International Journal of Stroke 2010;5(10):52-6. - PubMed
Harari 2004 {published data only}
    1. Harari D, Norton C, Lockwood L, Swift C. Treatment of constipation and fecal incontinence in stroke patients: randomised controlled trial. Stroke 2004;35:2549-55. - PubMed
Harrington 2010 {published data only}
    1. Harrington R, Taylor G, Hollinghurst S, Reed M, Kay H, Wood V. A community-based exercise and education scheme for stroke survivors: a randomized controlled trial and economic evaluation. Clinical Rehabilitation 2010;24(1):3-15. - PubMed
Hartke 2003 {published and unpublished data}
    1. Hartke R, King R. Head trauma and stroke. The effectiveness of a telephone support group for stroke caregivers. Rehabilitation R&D Progress Reports May 1997:124-5.
    1. Hartke RJ, King RB. Telephone group intervention for older stroke caregivers. Topics in Stroke Rehabilitation 2003;9(4):65-81. - PubMed
Harwood 2012 {published data only}
    1. Harwood M, Weatherall M, Talemaitoga A, Barber PA, Gommans J, Taylor W, et al. Taking charge after stroke: promoting self-directed rehabilitation to improve quality of life – a randomized controlled trial. Clinical Rehabilitation 2012;26(6):493-501. - PubMed
    1. Harwood M. A randomised controlled study to measure the effectiveness of an educational video compared to a goal setting exercise and to a control (written pamphlet) in the treatment of stroke to improve stroke recovery for Maori and Pacific people and their families. www.anzctr.org.au/trial (accessed August 2011).
Heron 2017 {published data only}
    1. Heron N, Kee F, Mant J, Reilly PM, Cupples M, Tully M, et al. Stroke Prevention Rehabilitation Intervention Trial of Exercise (SPRITE) - a randomised feasibility study. BMC Cardiovascular Disorders 2017;17:290. [DOI: 10.1186/s12872-017-0717-9] - DOI - PMC - PubMed
    1. Heron N. Optimising secondary prevention in the acute period following a TIA of ischaemic origin. BMJ Open Sport and Exercise Medicine 2017;2(1):e000161. [DOI: 10.1136/bmjsem-2016-000161] [PMID: ] - DOI - PMC - PubMed
    1. NCT02712385. SPRITE - a feasibility and pilot study [Stroke Prevention Rehabilitation Intervention Trial of Exercise - SPRITE - a feasibility and pilot study]. clinicaltrials.gov/show/NCT02712385 (first received 28 February 2016).
Hirano 2012 {published data only}
    1. Hirano Y, Maeshima S, Osawa A, Nishio D, Takeda K, Baba M, et al. The effect of voluntary training with family participation on early home discharge in patients with severe stroke at a convalescent rehabilitation ward. European Neurology 2012;68(4):221-8. [DOI: 10.1159/000338478] [PMID: ] - DOI - PubMed
Hochstenbach 1999 {published data only}
    1. The development and evaluation of a treatment program directed at the improvement of psychosocial behaviour following stroke. Hochstenbach J, Mulder T. Veterans Administration Database of Research in Progress, 1999. www.vard.org/prog/94/ch13/pr94257.
Hoffmann 2015 {published data only}
    1. Hoffmann T, Ownsworth T, Eames S, Shum D. Evaluation of brief interventions for managing depression and anxiety symptoms during early discharge period after stroke. Topics in Stroke Rehabilitation 2015;22(2):116-26. [DOI: 10.1179/1074935714Z.0000000030] [PMID: ] - DOI - PubMed
    1. Hoffmann T. Do stroke patients receiving either a self-management or cognitive-behavioural intervention demonstrate enhanced early emotional adjustment as compared with those receiving usual care? www.anzctr.org.au/trial_view.aspx?ID=308355 (accessed November 2011).
Holzemer 2011 {published data only}
    1. Holzemer E, Thanavaro J, Malmstrom T, Cruz-Flores S. Modifying risk factors after TIA and stroke: the impact of intensive education. Journal for Nurse Practitioners 2011;7(5):372-7.
Johnson 2018 {published data only}
    1. Johnson B, Handler D, Urrutia V, Alexandrov AW. Retention of stroke education provided during hospitalization: does provision of required education increase stroke knowledge? Interventional Neurology 2018;7(6):471-8. [DOI: 10.1159/000488884] - DOI - PMC - PubMed
Jones 2009 {published data only}
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Jones 2016 {published data only}
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Kamal 2018 {published and unpublished data}
    1. Kamal AK, Khalid W, Muqeet A, Jamil A, Farhat K, Gillani SR, et al. Making prescriptions "talk" to stroke and heart attack survivors to improve adherence: results of a randomized clinical trial (The Talking Rx Study). PLoS ONE 2018;13(12):e0197671. [DOI: 10.1371/journal.pone.0197671] - DOI - PMC - PubMed
    1. Kamal AK, Muqeet A, Farhat K, Khalid W, Jamil A, Gowani A, et al. Using a tailored health information technology- driven intervention to improve health literacy and medication adherence in a Pakistani population with vascular disease (Talking Rx) – study protocol for a randomized controlled trial. Trials 2016;17(1):121. [DOI: 10.1186/s13063-016-1244-1] - DOI - PMC - PubMed
    1. NCT02354040. Using a tailored health information technology driven intervention to improve health literacy and medication adherence [Using a tailored health information technology driven intervention to improve health literacy and medication adherence in a pakistani population with vascular disease]. clinicaltrials.gov/ct2/show/NCT02354040 (first received 29 January 2015). - PMC - PubMed
Kendall 2007 {published data only}
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Kronish 2014 {published data only}
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Lawal 2018 {published data only}
    1. Lawal I, Usman AG. Effectiveness of community-based education programme on quality of life and selected clinical outcomes of stroke survivors: a randomized controlled trial. International Journal of Stroke 2018;13(2 Suppl 1):8. [Abstract 022] [WSC18-0778]
Leathley 2003 {published data only}
    1. Leathley M, Fall S, Sharma A, Watkins C, Barer D. Life after stroke: multicentre trial of psychosocial interventions after stroke. Cerebrovascular Diseases 2003;16 Suppl 4:70.
Lincoln 2003 {published data only}
    1. Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M. Evaluation of a stroke family support organiser: a randomized controlled trial. Stroke 2003;34(1):116-21. - PubMed
Linn 1979 {published data only}
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Lo 2018 {published data only}
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    1. NCT02112955. A self-efficacy enhancing stroke self-management program for community-dwelling stroke survivors [A randomized controlled trial of the effectiveness of a nurse-led self-efficacy enhancing stroke self-management program for community-dwelling stroke survivors]. clinicaltrials.gov/ct2/show/record/NCT02112955 (first received 9 April 2014).
Lorenc 1992 {published and unpublished data}
    1. Lorenc L, Sturmey P, Brittain H. Evaluation of a meta-cognitive strategy to improve the information gained from a stroke information pack. Stress Medicine 1992;8(2):111-2.
Lynch 2016 {published data only}
    1. Lynch EA, Cadilhac DA, Luker JA, Hillier SL. Education-only versus a multifaceted intervention for improving assessment of rehabilitation needs after stroke; a cluster randomised trial. Implementation Science 2016;11(1):120. [DOI: 10.1186/s13012-016-0487-2] [PMID: ] - DOI - PMC - PubMed
Mackay‐Lyons 2010 {published data only}
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Mant 2000 {published data only}
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Mayo 2015 {published data only}
    1. Liu-Ambrose T, Eng JJ. Exercise training and recreational activities to promote executive functions in chronic stroke: a proof-of-concept study. Journal of Stroke and Cerebrovascular Diseases 2015;24(1):130-7. [DOI: 10.1016/j.jstrokecerebrovasdis.2014.08.012] [PMID: ] - DOI - PMC - PubMed
    1. Mayo NE, Anderson S, Barclay R, Cameron JI, Desrosiers J, Eng JJ, et al. Getting on with the rest of your life following stroke: a randomized trial of a complex intervention aimed at enhancing life participation post stroke. Clinical Rehabilitation 2015;29(12):1198-211. [DOI: 10.1177/0269215514565396] [PMID: ] - DOI - PubMed
    1. NCT01085240. Getting on with the rest of your life after a stroke [Getting on with the rest of your life after stroke: a cross-Canada program aimed at enhanced life participation, prevention of deterioration and optimization of health care utilization]. clinicaltrials.gov/ct2/show/record/NCT01085240 (first received 10 March 2010).
McKinney 1999 {published and unpublished data}
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Merchán‐Baeza 2015 {published data only}
    1. Merchán-Baeza JA, Gonzalez-Sanchez M, Cuesta-Vargas A. Clinical effect size of an educational intervention in the home and compliance with mobile phone-based reminders for people who suffer from stroke: protocol of a randomized controlled trial. JMIR Research Protocols 2015;4(1):e33. [DOI: 10.2196/resprot.4034] [PUBMED CENTRAL: PMC4376126] [PMID: ] - DOI - PMC - PubMed
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Napolitan 1999 {published data only}
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NCT00431821 {published data only}
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NCT01062243 {published data only}
    1. NCT01062243. Brain injury inpatient educational intervention for families and caregivers [Brain injury inpatient educational intervention for families and caregivers (a research project within the traumatic brain injury model system)]. clinicaltrials.gov/ct2/show/record/NCT01062243 (first received 29 January 2010).
NCT01693341 {published data only}
    1. NCT01693341. A caregiver-mediated intervention improves the functional ability of home-living chronic stroke patients [Caregiver-mediated intervention in home-living chronic stroke patients]. ClinicalTrials.gov/show/NCT01693341 (first received 20 September 2012).
NCT02591511 {published data only (unpublished sought but not used)}
    1. NCT02591511. Effects of patient-centered stroke educating system: a randomized controlled trial [Effects of health-education application on improving stroke-related knowledge and health related quality of life in patients with stroke: a randomized controlled trial]. clinicaltrials.gov/ct2/show/record/NCT02591511 (first received 28 October 2015).
NCT03034330 {published data only}
    1. NCT03034330. A two-tier care management program to empower stroke caregivers in Hong Kong [A two-tier care management program to empower stroke caregivers in Hong Kong: a randomized controlled trial]. clinicaltrials.gov/ct2/show/NCT03034330 (first received 27 January 2017).
NCT03708835 {published data only}
    1. NCT03708835. The effect of transitional care model-based interventions for stroke patients and their caregivers (TEMpEST) [The effect of transitional care model-based interventions for stroke patients and their caregivers in increasing caregivers' competence and on patient results]. clinicaltrials.gov/show/NCT03708835 (first received 24 May 2018).
NCT03861494 {published data only}
    1. NCT03861494. REcurrent Stroke Prevention through Personalized Education by Clinical Trainers (RESPPECT trial). ClinicalTrials.gov/show/NCT03861494 (first received 26 February 2019).
Neubert 2011 {published data only}
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Nguyen 2011 {published data only}
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Nir 2006 {published data only}
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O'Carroll 2010 {published data only}
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    1. O'Carroll RE, Chambers JA, Dennis M, Sudlow C, Johnston M. Improving adherence to medication in stroke survivors: a pilot randomised controlled trial. Annals of Behavioral Medicine 2013;46(3):358-68. [DOI: 10.1007/s12160-013-9515-5] [PMID: ] - DOI - PubMed
Olaiya 2016 {published data only}
    1. Olaiya MT, Cadilhac DA, Kim J, Ung D, Nelson MR, Srikanth VK, et al. Effectiveness of an intervention to improve risk factor knowledge in patients with stroke: a randomized controlled trial. Stroke 2017;48(4):1101-3. [DOI: 10.1161/STROKEAHA.116.016229] [PMID: ] - DOI - PubMed
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Ostwald 2014 {published data only}
    1. NCT00178529. Intervention for stroke survivors and their spousal caregivers. clinicaltrials.gov/ct2/show/NCT00178529 ( first received 12 September 2005).
    1. Ostwald SK, Godwin KM, Cron SG, Kelley CP, Hersch G, Davis S. Home-based psychoeducational and mailed information programs for stroke-caregiving dyads post-discharge: a randomized trial. Disability and Rehabilitation 2014;36(1):55-62. [DOI: 10.3109/09638288.2013.777806] [PMID: ] - DOI - PubMed
Pierce 2009 {published data only}
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    1. Steiner V, Pierce L, Windnagel F, Martincin K, Pawlak R, Salvador D. The impact of a web-based caregiver intervention on the reasons stroke survivors use health care services during the first year post treatment. Topics in Stroke Rehabilitation 2009;16(2):122-32. - PubMed
Printz‐Feddersen 1990 {published data only}
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Redfern 2008 {published data only}
    1. Redfern J, McKevitt C, Rudd A, Heuschmann P, Grieve A, Wolfe C. Stop stroke: cluster randomised controlled trial of a patient/caregiver and general practitioner intervention to improve risk factor management after stroke. Cerebrovascular Diseases 2009;27:66.
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    1. Wolfe C, Redfern J, Rudd A, Grieve A, Heuschmann P, McKevitt C. Cluster randomized controlled trial of a patient and general practitioner intervention to improve the management of multiple risk factors after stroke: stop stroke. Stroke 2010;41(11):2470-6. - PubMed
Rimmer 2000 {published data only}
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Rochette 2013 {published data only}ISRCTN95662526
    1. Rochette A, Korner-Bitensky N, Bishop D, Teasell R, White C, Bravo G, et al. Study protocol of the YOU CALL - WE CALL TRIAL: impact of a multimodal support intervention after a "mild" stroke. BMC Neurology 2010;10(3):3. [DOI: 10.1186/1471-2377-10-3] [PUBMED CENTRAL: PMC2818655] [PMID: ] - DOI - PMC - PubMed
    1. Rochette A, Korner-Bitensky N, Bishop D, Teasell R, White CL, Bravo G, et al. The YOU CALL-WE CALL randomized clinical trial: impact of a multimodal support intervention after a mild stroke. Circulation-Cardiovascular Quality and Outcomes 2013;6(6):674-9. [DOI: 10.1161/CIRCOUTCOMES.113.000375] [PMID: ] - DOI - PubMed
    1. Rochette A, Korner-Bitensky N, White CL, Bravo G, Côté R, Green T, et al. Abstract NS13: YOU CALL - WE CALL trial: impact of a multimodal support intervention after a "mild" stroke. Stroke 2013;44(2 Suppl 1: Meeting abstracts):ANS13. [CENTRAL: CN-01025714] [EMBASE: 71143734]
Saal 2015 {published data only}
    1. Saal S, Becker C, Lorenz S, Schubert M, Kuss O, Stang A, et al. Effect of a stroke support service in Germany: a randomized trial. Topics in Stroke Rehabilitation 2015;22(6):429-36. [DOI: 10.1179/1074935714Z.0000000047] [PMID: ] - DOI - PubMed
Sabariego 2013 {published data only}
    1. Sabariego C, Barrera AE, Neubert S, Stier-Jarmer M, Bostan C, Cieza A. Evaluation of an ICF-based patient education programme for stroke patients: a randomized, single-blinded, controlled, multicentre trial of the effects on self-efficacy, life satisfaction and functioning. British Journal of Health Psychology 2013;18(4):707-28. [DOI: 10.1111/bjhp.12013] [PMID: ] - DOI - PubMed
Sahebalzamani 2009 {published data only}
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Sajatovic 2018 {published data only}
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Sanguinetti 1987 {published data only}
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Shyu 2008 {published data only}
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    1. Shyu Y, Kuo L, Chen M, Chen S. A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan. Journal of Clinical Nursing 2010;19(11-12):1675-85. - PubMed
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Skidmore 2008 {published data only}
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Spassova 2016 {published data only}
    1. NCT02444715. Computer-aided prevention system [Study on improved prevention methods for cerebro-cardiovascular diseases based on a computer-aided prevention system]. clinicaltrials.gov/ct2/show/NCT02444715 (first received 14 May 2015).
    1. Spassova L, Vittore D, Droste DW, Rösch N. Randomised controlled trial to evaluate the efficacy and usability of a computerised phone-based lifestyle coaching system for primary and secondary prevention of stroke. BMC Neurology 2016;16:22. [DOI: 10.1186/s12883-016-0540-4] [PMID: ] - DOI - PMC - PubMed
Tielemans 2015 {published data only}
    1. Tielemans NS, Schepers VP, Visser-Meily JM, Erp J, Eijkenaar M, Heugten CM. The Restore4Stroke self-management intervention 'Plan ahead!': rationale and description of the treatment protocol based on proactive action planning. Clinical Rehabilitation 2014;28(6):530-40. [DOI: 10.1177/0269215513514460] [PMID: ] - DOI - PubMed
    1. Tielemans NS, Visser-Meily JM, Schepers VP, Post MW, Wade DT, Heugten CM. Study protocol of the Restore4Stroke self-management study: a multicenter randomized controlled trial in stroke patients and their partners. International Journal of Stroke 2014;9(6):818-23. [DOI: 10.1111/ijs.12127] [PMID: ] - DOI - PubMed
    1. Tielemans NS, Visser-Meily JM, Schepers VP, de Passier PE, Port IG, Vloothuis JD, et al. Effectiveness of the Restore4Stroke self-management intervention "Plan ahead!": a randomized controlled trial in stroke patients and partners. Journal of Rehabilitation Medicine 2015;47(10):901-9. [DOI: 10.2340/16501977-2020] [PMID: ] - DOI - PubMed
Tilling 2005 {published data only}
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Towle 1989 {published data only}
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    1. Towle D, Lincoln NB, Mayfield LM. Evaluation of social work on depression after stroke. Clinical Rehabilitation 1989;3:89-96.
Winkens 2009 {published data only}
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Yu 2019 {published data only}
    1. Yu F, Li H, Tai C, Guo T, Pang D. Effect of family education program on cognitive impairment, anxiety, and depression in persons who have had a stroke: a randomized, controlled study. Nursing & Health Sciences 2019;21(1):44-53. [DOI: 10.1111/nhs.12548] - DOI - PubMed

References to studies awaiting assessment

Andrea 2003 {published data only}
    1. Andrea S, Kotzabassaki S, Bellou M, Vardaki Z. Evaluation of the effectiveness of a self-care educational program on activities of daily living, performed by hemiplegic patients. ICUs and Nursing Web Journal 2003;(16).
Bhatia 2015 {published data only}
    1. Bhatia R, Thomas A, Agarwal M. Effectiveness of a structured teaching programme in improving the knowledge and skills of the care givers and preventing secondary complications in hospitalized stroke patients. Neurology 2015;84 Suppl 14:P5.147.
Bodin 2011 {published data only}
    1. Bodin S, Labrunee-Prod'homme K, Delort-Albrespit I, Castel-Lacanal E, Labrunee M, Marque P, et al. Impact of early information of close relative about communication with an aphasic patient: InfoCom study. Annals of Physical and Rehabilitation Medicine 2011;54:e215.
Bonita 1995 {unpublished data only}
    1. Bonita R. Provision of an information leaflet. Unpublished.
Choi 2006 {published data only}
    1. Choi JS, Seo YM, Kwon IS. Effects of education on knowledge and practice of caregivers of the stroke patient. Taehan Kanho Hakhoe Chi 2006;36(7):1175-82. - PubMed
Heier 2002 {published data only}
    1. Heier H, Laemmler G, Steinhagen-Thiessen E. Evaluation of a psychoeducative intervention program for caregivers of stroke patients. Zeitschrift Fuer Neuropsychiogie 2002;13(3):201-9.
Jian 1998 {published data only}
    1. Jian S, Chi LI. A study on patient education for stroke survivors in Wuhan of China. Annals of Oncology 1998;9 Suppl 3:77. [DOI: 10.1093/annonc/9.suppl_3.67] [Poster 119] - DOI
JPRN‐UMIN000016716 {published data only (unpublished sought but not used)}JPRN‐UMIN000016716
    1. JPRN-UMIN000016716. Effect of fall prevention education programs for patients in convalescent phase after stroke [Effect of fall prevention education programs for patients in convalescent phase after stroke: a randomized controlled trial]. upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000019395 (first received 5 March 2015).
Kim 2011 {published data only}
    1. Kim CG, Park HA. Development and evaluation of a web-based education program to prevent secondary stroke. Journal of Korean Academy of Nursing 2011;41(1):47-60. - PubMed
Madarshahian 2018 {published data only}
    1. Madarshahian F, Safaie yazdi N, Safaie yazdi A, Roohbakhsh far O, Madarshahian MR. Impact of family support on medication adherence and cognition in stroke patients. European Stroke Journal 2018;3(1 Suppl 1):296. [AS13-015]
Mendyk 2018 {published data only}
    1. Mendyk A-M, Duhamel A, Bejot Y, Leys D, Derex L, Dereeper O, et al. Controlled Education Of Patients after Stroke (CEOPS) - nurse-led multimodal and long-term interventional program involving a patient’s caregiver to optimize secondary prevention of stroke: study protocol for a randomized controlled trial. Trials 2018;19(1):137. [DOI: 10.1186/s13063-018-2483-0] - DOI - PMC - PubMed
    1. NCT02132364. Controlled Education Of Patients After Stroke. clinicaltrials.gov/ct2/show/record/NCT02132364 (first received 5 May 2014).
NCT02140619 {published data only (unpublished sought but not used)}
    1. NCT02140619. Affect of multiple health education on medication persistence and clinical prognosis of ischemic stroke patients [Affect of multiple health education interventions on secondary prevention medication persistence and clinical prognosis of ischemic stroke patients: a prospective cohort study]. clinicaltrials.gov/ct2/show/record/NCT02140619 (first received 5 May 2014).
NCT02140658 {published data only (unpublished sought but not used)}
    1. NCT02140658. Affect of health education on statins medication persistence and clinical prognosis of ischemic stroke patients (HELP) [Affect of multiple health education interventions on statins medication persistence and clinical prognosis of ischemic stroke patients (HELP): a prospective cohort study]. clinicaltrials.gov/ct2/show/record/NCT02140658 (first received 5 May 2014).
NCT02834273 {published data only (unpublished sought but not used)}
    1. NCT02834273. Patient education following a stroke [Impact of patient education following a stroke on knowledge of risk factors, stroke warning signs and what to do in cases of stroke]. clinicaltrials.gov/show/NCT02834273 (first received 20 June 2016).
Piano 2010 {published data only}
    1. Piano AN, Roxas AA, Aganon F, Ticod MLJC, Sibulo JV, Cajucom T, et al. Stroke awareness among stroke victors: a randomized open label clinical trial comparing videobased stroke education program vs nurse education. International Journal of Stroke 2010;5 Suppl 2:281.
Sun 2011 {published data only}
    1. Sun M, Ling XM, Yu DF. Effects of personalized health education on quality of life in patients with stroke. Journal of Shanghai Jiaotong University (Medical Science) 2011;31(7):996-9.
Tuncay 2006 {published data only}
    1. Tuncay FO, Mollaoglu M. The effect of a self-care education program on cerebrovascular disease patients' activities of daily living. Neurology Psychiatry and Brain Research 2006;13(2):83-8.
Young 2007 {published data only}ISRCTN48466607
    1. Young C. Education to increase self efficacy for patients having rehabilitation after monophasic neurological disability. www.nrr.nhs.uk/ (accessed March 2007).

References to ongoing studies

ACTRN12618002050235 {published and unpublished data}ACTRN12618002050235U1111‐1224‐8551
    1. ACTRN12618002050235. Would knowing your risk for getting stroke make you change your lifestyle? [Influence of stroke riskometer on making lifestyle changes among urban dwelling malaysian stroke caregivers: a pilot randomised controlled trial]. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=376497 (first received 1 December 2018).
Amooba 2018 {published data only}
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Appalasamy 2018 {published data only}ACTRN12618000174280U1111‐1201‐3955
    1. Appalasamy JR, Tha KK, Quek KF, Ramaiah SS, Joseph JP, Md Zain AZ. The effectiveness of culturally tailored video narratives on medication understanding and use self-efficacy among stroke patients: a randomized controlled trial study protocol. Medicine 2018;97(22):e10876. [DOI: 10.1097/MD.0000000000010876] [PMID: ] - DOI - PMC - PubMed
ChiCTR‐IIC‐17011458 {published data only}ChiCTR‐IIC‐17011458
    1. ChiCTR-IIC-17011458. A study to evaluate the effectiveness of a structured patient education on patient discharge in Department of Medicine and Therapeutics, Prince of Wales Hospital. www.chictr.org.cn/showproj.aspx?proj=19477 (first received 19 May 2017).
CN‐01155247 {published data only}CN‐01155247
    1. CN-01155247. A stepped-wedge cluster randomized controlled trial for evaluating an intervention in patients with stroke tailored education in addition to physiotherapist treatment. www.cochranelibrary.com/central/doi/10.1002/central/CN-01155247 (first received 31 July 2016).
Coombes 2018 {published data only}ACTRN12615000888561
    1. ACTRN12615000888561. A conversation with patients about medications after a stroke [In patients admitted for a stroke or TIA does a patient centred education exchange added to usual care versus usual care improve self-management of medications (defined as organising ongoing supply of medications, medication taking behaviour/adherence, and monitoring and reporting of perceived adverse effects)?]. www.anzctr.org.au/ACTRN12615000888561.aspx 29 July 2015.
    1. Coombes JA, Rowett D, Whitty JA, Cottrell WN. Use of a patient-centred educational exchange (PCEE) to improve patient’s self-management of medicines after a stroke: a randomised controlled trial study protocol. BMJ Open 2018;8(8):e022225. [DOI: 10.1136/bmjopen-2018-022225] [PUBMED CENTRAL: PMC6119418] [PMID: ] - DOI - PMC - PubMed
CTRI/2017/07/009014 {published data only}CTRI/2017/07/009014
    1. CTRI/2017/07/009014. A study to evaluate the effect of a technology driven educational intervention for management of disabilities following stroke in India [A randomized controlled trial to evaluate the effectiveness of the ‘Care for Stroke’ intervention in India, a smartphone-enabled, carer-supported,educational intervention for management of disabilities following stroke]. www.ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=19311 (first received 4 July 2017).
CTRI/2017/08/009267 {published data only}CTRI/2017/08/009267
    1. CTRI/2017/08/009267. Role of smartphone stroke app to reduce post stroke complications amongstroke patients [Medical Application based Post Stroke care Strategy (MAPSS) for survivors and their caregivers: a randomized controlled trial]. www.ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=17654 (first received 4 August 2017).
CTRI/2017/09/009600 {published data only}CTRI/2017/09/009600
    1. CTRI/2017/09/009600. Behavioral modifications in stroke patients through education [Secondary prevention by structured semi-interactive stroke prevention package in India (SPRINT - INDIA)]. www.ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=17636 (first received 1 September 2017).
    1. NCT03228979. Secondary prevention by structured semi-interactive stroke prevention package in India (SPRINT INDIA) study. clinicaltrials.gov/ct2/show/record/NCT03228979 (first received 25 January 2018).
CTRI/2018/11/016312 {published data only}CTRI/2018/11/016312
    1. CTRI/2018/11/016312. A clinical trial to evaluate the role of education to care givers in reducing complications and improving outcomes of hospitalized stroke patients [Evaluating the role of structured education to care givers in reducing complications in hospitalized stroke patients and improving their outcomes - a cluster randomized trial]. www.ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=27947 (first received 9 November 2018).
Day 2018 {published data only}
    1. Day CB, Bierhals CC, Santos NO, Mocellin D, Predebon ML, Dal Pizzol FLF, et al. Nursing home care educational intervention for family caregivers of older adults post stroke (SHARE): study protocol for a randomised trial. Trials 2018;19(1):96. [DOI: 10.1186/s13063-018-2454-5] [PMID: ] - DOI - PMC - PubMed
IRCT20180419039362N1 {published data only}IRCT20180419039362N1
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NCT02398409 {published data only}
    1. NCT02398409. Informal caregivers ANSWERS-VA [Telephone assessment and skill-building intervention for informal caregivers]. clinicaltrials.gov/show/NCT02398409 (first received 25 March 2015).
NCT02569099 {published data only}
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NCT02769871 {published data only}
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RBR‐3n4tzc {published data only}RBR‐3n4tzcU1111‐1223‐0031
    1. RBR-3n4tzc. Effectiveness of educational primer for caregivers of stroke patients [Effect of educational primer for caregivers of stroke victims: randomized controlled trial]. www.ensaiosclinicos.gov.br/rg/RBR-3n4tzc/v1/ (first received 30 October 2018).
Sureshkumar 2018 {published data only}CTRI/2017/07/009014
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Tisel 2018 {published data only}
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    1. Tisel S, Rieman A, Hodges M, Gwathmey K. Assessing patient knowledge and satisfaction following stroke video education. Circulation: Cardiovascular Quality and Outcomes 2018;11 Suppl 1:A245. [DOI: 10.1161/circoutcomes.11.suppl_1.245] - DOI
UMIN000030651 {published data only}UMIN000030651
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