Information provision for stroke survivors and their carers
Thomas F Crocker, Lesley Brown, Natalie Lam, Faye Wray, Peter Knapp, Anne Forster, Thomas F Crocker, Lesley Brown, Natalie Lam, Faye Wray, Peter Knapp, Anne Forster
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.
Conflict of interest statement
Thomas F Crocker
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
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
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).
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).
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.
Declaring involvement in eligible studies:
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
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
Copyright © 2021 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
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Source: PubMed