Tableaux de données probantes et liste de reference (en anglais)
Following stroke, patients, families and informal caregivers are typically faced with multiple life changes and challenges as the person with stroke transitions between the stages of recovery. Gallacher et al. (2013) reviewed 69 qualitative studies examining the concept of patient burden following stroke, highlighting the impact it may have on the effectiveness of interventions and patient satisfaction with health care services. The authors identified the components of stroke recovery that were particularly burdensome to patients including receiving information, interacting with others, comparing treatment options, managing in different environments (acute care, inpatient rehabilitation, community, society) and adjusting to daily activities. Caring for a person following a stroke may also have a considerable impact of the health and vocational status of caregivers. Caregivers reported spending significantly longer periods of time providing caring for persons with stroke, relative to pre-stroke levels (Olai et al. 2015). Depression and anxiety may also be increased. Loh et al. (2017) estimated the prevalence of depressive symptoms and anxiety among stroke caregivers to be 40.2% and 21.4%, respectively. Hayes et al. (2009) conducted telephone interviews with 275 veterans who had sustained a first-ever stroke and their informal caregivers to explore the association between caregiver characteristics and the development of injuries. Caregivers who reported a physical injury were more likely to report higher levels of burden, provided more hours of care per week, exhibited more depressive symptoms and fewer healthy days per month compared to carers reporting no injury. The most common type of injury reported was a back injury and 53% of injured carers stated that the injury interfered with their ability to provide care. Significant predictors of injury were higher caregiver burden (OR=1.62, 95% CI 1.14-2.31, p=0.008) and depression (OR=1.10, 95% CI 1.04-1.17, p=0.001). Ko et al. (2007) interviewed 132 caregivers and reported that while 52% were working full time or part-time, prior to the stroke, the majority of working caregivers reported reducing their hours of paid work, or missing work, while 9 caregivers retired or resigned. Rochette et al. (2007) reported that 6 months following stroke, 35.2% of spouses, of a sample of 54 had a high level of burden (Caregiver Strain Index score ≥7) and 17% were identified with possible depression (Beck Depression Inventory BDI score ≥10).
The needs of patients and their informal caregivers has been explored in several qualitative studies using in-person or telephone interviews. Similar themes emerged across studies. Cameron et al. (2014) included 16 patients recruited from an inpatient rehabilitation stroke facility and 15 informal caregivers, who were interviewed following their first weekend pass from inpatient rehabilitation and again 4 weeks following discharge home. Twenty health-care professional (HCP) were also interviewed. Three key themes emerged including issues surrounding preparing patients for safe return home. Patients discussed the need to feel safe in the home environment while caregivers discussed their need to feel supported. Assessing the patient for readiness was a key theme discussed by HCPs. Patients noted gaining insight into what life would be like, and caregivers evaluated their abilities to care for the person with stroke. Patients and caregivers discussed the range of emotions they experienced and how their experienced changes before and after the weekend pass. In a similar study including 24 informal caregivers to persons with stroke and 14 HCP (Cameron et al. 2013), the themes emerged from both the caregivers and the HCP concerned the type and intensity of support needed, who provides support and the method of providing support and the primary focus of care. Creasy et al. (2013) interviewed 17 family caregivers close to the point of discharge from hospital and the again within 4 months of discharge. In the first interview, caregivers expressed information needs related to their role as caregiver in preparation for discharge home and expressed concerns for their own emotional support needs and their ability to provide emotional support. During the second interview caregivers discussed their experiences with caregiver-provider interactions, some of which were positive, others, negative. The caregivers of 90 patients were interviewed one year following stroke (Smith et al 2014). Caregivers reported delays and barriers waiting for applications/funding for alterations to make the home more accessible, having to provide care in the immediate post-discharge period with no skills training and lack of follow-up with GPs. They also described difficulties coping with patients’ quick anger and emotional lability and lack of attention to their physical and emotional ability to provide care.
The feasibility and effectiveness of telestroke has also been evaluated in the context of rehabilitation therapy, where it is often referred to as “telerehabilitation” or “telerehab”. The results of these studies have been ambiguous. Chen et al. (2016) included the results of 7 RCTs that included patients who received rehab therapies through telemedicine systems for a minimum of 4 weeks in duration via virtual reality-based training, telephone, or the internet. There was no additional benefit associated with telerehab, compared to usual care. The mean Barthel Index scores, Berg Balance Scale scores and Fugl-Meyer (Upper Extremity) scores were similar between groups. A Cochrane review (Laver et al. 2013) included the results of 10 RCTs examining telerehabilitation. The number of trials which could be pooled were limited as the treatment contrasts and outcomes assessed were highly variable. Although the authors reported no significant differences between groups in upper-limb function or performance in ADL, they concluded that there was insufficient evidence to support or refute the effectiveness of telerehabilitation following stroke. Chumbler et al. (2012, 2015) evaluated the effectiveness of a Stroke Telerehabilitation program (STeleR) among 52 veterans who had suffered a stroke within the previous two years. The intervention, which focused on improvement of functional mobility, included 3 components: 3x 1 hour televisits to the participant’s home, 5 telephone calls and an in-home messaging device system to instruct patients on functional exercises and adaptive strategies. At 6 months, there were no significant differences in the primary outcomes, the Telephone Version of FIM, the Late-Life Function and Disability Instrument or Falls Efficacy Scale, between groups. There was a significant difference between groups, from baseline to 6 months, in the mean Stroke-specific Patient Satisfaction with Care Scale (hospital care sub score) at 6 months, favouring the STeleR group.