Training caregivers of disabled patients after stroke
2013; Elsevier BV; Volume: 382; Issue: 9910 Linguagem: Inglês
10.1016/s0140-6736(13)61688-8
ISSN1474-547X
Autores Tópico(s)Acute Ischemic Stroke Management
ResumoAt least a third of stroke survivors remain disabled, making stroke the third leading cause of disability-adjusted life-years (DALYs) worldwide.1Luengo-Fernandez R Paul NL Gray AM et al.on behalf of the Oxford Vascular StudyPopulation-based study of disability and institutionalization after transient ischemic attack and stroke: 10-year results of the Oxford Vascular Study.Stroke. 2013; (published online Aug 6.)https://doi.org/10.1161/STROKEAHA.113.001584Crossref PubMed Scopus (161) Google Scholar, 2Murray CJL Vos T Lozano R et al.Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010.Lancet. 2012; 380: 2197-2223Summary Full Text Full Text PDF PubMed Scopus (6700) Google Scholar Most (about 75%) disabled survivors of stroke need assistance to undertake personal, domestic, and community-based activities of daily living.3Dewey HM Thrift AG Mihalopoulos C et al.Informal care for stroke survivors: results from the North East Melbourne Stroke Incidence Study (NEMESIS).Stroke. 2002; 33: 1028-1033Crossref PubMed Scopus (127) Google Scholar Assistance is often provided informally by family and friends who might be ill-informed or ill-prepared physically and emotionally.3Dewey HM Thrift AG Mihalopoulos C et al.Informal care for stroke survivors: results from the North East Melbourne Stroke Incidence Study (NEMESIS).Stroke. 2002; 33: 1028-1033Crossref PubMed Scopus (127) Google Scholar Informal caregiving imposes a persistent burden on 25–50% of caregivers, dependent on the mental health, mood, and requirements of the caregiver as well as on the age, mental health, and function of the patient.4Rigby H Gubitz G Phillips S A systematic review of caregiver burden following stroke.Int J Stroke. 2009; 4: 285-292Crossref PubMed Scopus (219) Google Scholar, 5Carod-Artal FJ Ferreira Coral L Trizotto DS Menezes Moreira C Burden and perceived health status among caregivers of stroke patients.Cerebrovasc Dis. 2009; 28: 472-480Crossref PubMed Scopus (54) Google Scholar, 6McCullagh E Brigstocke G Donaldson N Kalra L Determinants of caregiving burden and quality of life in caregivers of stroke patients.Stroke. 2005; 36: 2181-2186Crossref PubMed Scopus (320) Google Scholar, 7Rigby H Gubitz G Eskes G et al.Caring for stroke survivors: baseline and 1-year determinants of caregiver burden.Int J Stroke. 2009; 4: 152-158Crossref PubMed Scopus (65) Google Scholar Caregiver burden can compromise caregivers' health and patients' rehabilitation and recovery.4Rigby H Gubitz G Phillips S A systematic review of caregiver burden following stroke.Int J Stroke. 2009; 4: 285-292Crossref PubMed Scopus (219) Google Scholar, 5Carod-Artal FJ Ferreira Coral L Trizotto DS Menezes Moreira C Burden and perceived health status among caregivers of stroke patients.Cerebrovasc Dis. 2009; 28: 472-480Crossref PubMed Scopus (54) Google Scholar, 6McCullagh E Brigstocke G Donaldson N Kalra L Determinants of caregiving burden and quality of life in caregivers of stroke patients.Stroke. 2005; 36: 2181-2186Crossref PubMed Scopus (320) Google Scholar, 7Rigby H Gubitz G Eskes G et al.Caring for stroke survivors: baseline and 1-year determinants of caregiver burden.Int J Stroke. 2009; 4: 152-158Crossref PubMed Scopus (65) Google Scholar Non-pharmacological interventions to reduce the burden on informal caregivers and facilitate patients' recovery after stroke have been assessed in eight randomised trials including 1007 participants.8Legg LA Quinn TJ Mahmood F et al.Non-pharmacological interventions for caregivers of stroke survivors.Cochrane Database Syst Rev. 2011; 10 (CD008179.)PubMed Google Scholar Of these interventions, the most promising one is the London Stroke Caregivers Training Course (LSCTC).8Legg LA Quinn TJ Mahmood F et al.Non-pharmacological interventions for caregivers of stroke survivors.Cochrane Database Syst Rev. 2011; 10 (CD008179.)PubMed Google Scholar, 9Kalra L Evans A Perez I et al.Training carers of stroke patients: randomised controlled trial.BMJ. 2004; 328: 1099Crossref PubMed Scopus (331) Google Scholar In a randomised trial within a single stroke unit,9Kalra L Evans A Perez I et al.Training carers of stroke patients: randomised controlled trial.BMJ. 2004; 328: 1099Crossref PubMed Scopus (331) Google Scholar the caregivers received the LSCTC while the caree was still an inpatient. The LSCTC facilitated earlier hospital discharge of the patient and reduced caregivers' stress, strain, and depression.8Legg LA Quinn TJ Mahmood F et al.Non-pharmacological interventions for caregivers of stroke survivors.Cochrane Database Syst Rev. 2011; 10 (CD008179.)PubMed Google Scholar, 9Kalra L Evans A Perez I et al.Training carers of stroke patients: randomised controlled trial.BMJ. 2004; 328: 1099Crossref PubMed Scopus (331) Google Scholar However, whether the LSCTC was efficient in other stroke units was unknown. In The Lancet, Anne Forster and colleagues10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar report the results of the training caregivers after stroke (TRACS) trial of the LSCTC in several stroke units throughout the UK. In this cluster randomised trial,10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar 36 stroke units were randomly assigned to either the LSCTC group (n=18, containing 450 dyads of patients and caregivers) or usual care (n=18, containing 478 dyads). The LSCTC was incorporated into routine practice by the multidisciplinary team of every assigned stroke unit, and carers were given (1) individualised information about stroke and instructions about communication, nutrition, positioning, gait facilitation, continence, secondary prevention, medicine compliance, and anticipation and prevention of stroke-related complications (eg, pressure areas); (2) advice on local services; and (3) hands-on training in assisting with personal activities of daily living, lifting and handling techniques, and facilitation of mobility and transfers. At 6 months after randomisation, the caregivers' burden, assessed by the caregiver burden scale in 673 (73%) of the 928 caregivers, was similar between caregivers allocated the LSCTC intervention and those allocated usual care (adjusted mean scores: 45·5 for the intervention group vs 45·0 for the control group; difference 0·5 points, 95% CI –1·7 to 2·7).10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar Patients' functional outcome, as measured by the self-reported Nottingham activities of daily living score in 690 (74%) of the 928 patients, was similar between patients allocated the LSCTC intervention and those allocated usual care (adjusted mean scores 27·4 vs 27·6; difference –0·2 points, –3·0 to 2·5).10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar The mean cost of the LSCTC intervention was only £82 per patient, but the total patient costs and quality-adjusted life-years (QALYs) for patients and caregivers at any assessment were similar between the intervention and control groups, and the probability that the intervention was cost-effective, at accepted thresholds of £20 000 to £30 000 per QALY gained, was low.10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar How do we interpret the discordant positive results of the small, single-centre randomised trial including individuals9Kalra L Evans A Perez I et al.Training carers of stroke patients: randomised controlled trial.BMJ. 2004; 328: 1099Crossref PubMed Scopus (331) Google Scholar and the negative results of a larger, multicentre, randomised trial including clusters of stroke units?10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar Similar examples of initial positive, and subsequent negative, results of randomised trials of other medical interventions populate the medical literature.11Zhang J Yang J Zhang C Jiang X Zhou H Liu M Calcium antagonists for acute ischemic stroke.Cochrane Database Syst Rev. 2012; 5 (CD001928.)Google Scholar, 12Dávalos A Alvarez-Sabín J Castillo J et al.International Citicoline Trial on acUte Stroke (ICTUS) trial investigatorsCiticoline in the treatment of acute ischaemic stroke: an international, randomised, multicentre, placebo-controlled study (ICTUS trial).Lancet. 2012; 380: 349-357Summary Full Text Full Text PDF PubMed Scopus (199) Google Scholar The usual explanation is a false positive initial study due to random error associated with small numbers of patients. The initial single-centre randomised trial might have been a true positive, and the TRACS result a false negative, if any of the following three circumstances prevailed. First, if the outcomes of the 26% of patients and 27% of caregivers who failed to complete follow-up in TRACS were substantially different to the outcomes of those who completed follow-up. Second, if suboptimum compliance with the intervention (average 44%) and completion of training records (72%) in TRACS minimised or negated a real effect—intervention compliance did not correlate with caregiver or patient outcome, however. Finally, if the LSCTC has been incorporated into usual care, thus minimising the difference between treatment groups. This final situation is unlikely since no evidence of widespread use of the LSCTC in routine care has been noted and the burden of caregiving for disabled stroke survivors remains substantial.4Rigby H Gubitz G Phillips S A systematic review of caregiver burden following stroke.Int J Stroke. 2009; 4: 285-292Crossref PubMed Scopus (219) Google Scholar, 5Carod-Artal FJ Ferreira Coral L Trizotto DS Menezes Moreira C Burden and perceived health status among caregivers of stroke patients.Cerebrovasc Dis. 2009; 28: 472-480Crossref PubMed Scopus (54) Google Scholar, 7Rigby H Gubitz G Eskes G et al.Caring for stroke survivors: baseline and 1-year determinants of caregiver burden.Int J Stroke. 2009; 4: 152-158Crossref PubMed Scopus (65) Google Scholar I believe the TRACS results are a true negative. The internal validity of the results are supported by the balanced covariates between treatment groups, use of appropriate outcome measures, and consistency of the primary results with the secondary physical and psychological outcomes of patients and caregivers at 6 and 12 months. External validity is supported by consistent results among 36 stroke units throughout four regions of the UK. The initial single-centre trial might have been a true positive and the subsequent TRACS results a true negative because the LSCTC may be efficacious only when given under ideal circumstances by the multidisciplinary team who developed it, or by teams with similar expertise, enthusiasm, and intensity. When given under usual circumstances, in different geographical and health-care settings and cascaded down by staff attending the training days to other ward workers, as in TRACS, its effectiveness might have been diluted or even negated. The implication of TRACS' results10Forster A Dickerson J Young J et al.on behalf of the TRACS Trial CollaborationA structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysis.Lancet. 2013; (published online Sept 18.)http://dx.doi.org/10.1016/S0140-6736(13)61603-7PubMed Google Scholar for clinicians is that inpatient delivery of the LSCTC is not more effective or cost-effective than usual care in reducing the burden of caregiving or improving the functional outcome of disabled stroke survivors. The implications for researchers are that multicentre, cluster randomised trials of stroke rehabilitation strategies are feasible, but also challenging in adherence, compliance, and follow-up. Future trials should assess the potential complementary benefits of supplementing initial intensive hospital-based training of carers with integrated home-based and community-based carer training and support over the long term. Meanwhile, we await the results of a recently completed cluster randomised trial of a system of care for 800 community-based patients who have had a stroke and their carers, in 32 stroke services across the UK, which was delivered by health professionals undertaking a community-based liaison or coordinating role, and which aimed to meet the longer-term needs for stroke survivors and their carers living at home.13Forster A Young J Nixon J et al.Protocol of a cluster randomized trial evaluation of a patient and carer-centered system of longer-term stroke care (LoTS care).Int J Stroke. 2013; (published online Feb 19.)https://doi.org/10.1111/ijs.12038Crossref PubMed Scopus (6) Google Scholar I declare that I have no conflicts of interest. A structured training programme for caregivers of inpatients after stroke (TRACS): a cluster randomised controlled trial and cost-effectiveness analysisIn a large scale, robust evaluation, results from this study have shown no differences between the LSCTC and usual care on any of the assessed outcomes. The immediate period after stroke might not be the ideal time to deliver structured caregiver training. Full-Text PDF
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