Tableaux de données probantes et liste de reference (en anglais)
Education across the continuum of care is an important component of support for patients, families and informal caregivers, particularly with regard to secondary stroke prevention and chronic disease self-management. A 2012 Cochrane review (Forster et al. 2012) assessed interventions related to the provision of information, compared with usual care and included the results from 21 RCTs (2289 patients and 1290 carers). In 14 trials, the intervention was focused on either the patient or carer exclusively. In the remaining trials, the intervention was focused on both groups. Patients and caregivers receiving an intervention had improved knowledge of stroke services (SMD=0.29, 95% CI 0.12 to 0.46, p<0.001 and SMD=0.74, 95% CI 0.06 to 1.43, p<0.05, respectively) and patients expressed greater satisfaction with stroke information (OR=2.07, 95% CI 1.33 to 3.23, p<0.001) compared to patients in the control group. Patients receiving an intervention also experienced improvements in depression scores (MD=-0.52, 95% CI -0.93 to -0.10, P<0.05) with greater effects associated with interventions that were considered “active”. Interventions were considered active if there was patient or caregiver engagement during the sessions. Engagement could include the opportunity to ask questions, request additional information, be provided with hands-on training, or involve the use of an interactive workbook and/or some means of follow-up reinforcement.
Several randomized trials have evaluated the effects of information and support packages for patients and their caregivers following stroke. Those trials that simply provided participants with written information as the intervention tended to be less effective compared with programs that included additional components. Eames et al. (2013) randomized 138 patients and their carers to receive an individually tailored education and support package with verbal reinforcement for 3 months, or to a usual care group, which received unstructured, informal education. Patients in the intervention group reported significantly greater self-efficacy (access to stroke information domain, p<0.04), feeling of being informed (p<0.01), and satisfaction with medical (p<0.001), practical (p<0.01), service/benefit (p<0.05), and secondary prevention (p<0.001) information received. Lowe et al. (2007) evaluated the use of a “CareFile”, an information package containing relevant support services and secondary prevention resources that was individualized for each patient. One hundred patients participated in the study, 50 randomized to the intervention group and 50 to the control group. At six months, 98% patients in the intervention group reported that the CareFile provided useful information and 53% said that they used it as reference material regarding their stroke. Patients in the intervention group demonstrated greater knowledge of stroke risk factors than patients in the control group at both 3 and 6 months after stroke (Mean difference=0.5, 95% CI 0.0 to 1.1; Mean Difference 0.8, 95% CI 0.3 to 1.4). Hoffman et al. (2007) randomized 138 patients to receive either computer-generated tailored written information or generic written information. At three months, there were no significant differences between groups in mean change scores for stroke knowledge, self-efficacy or depression.
Telephone- based interventions have also been examined as a method of providing support and education; Bakas et al. (2009) randomized 50 caregivers of stroke survivors with ongoing needs to a Telephone Assessment and Skill Building Kit (TASK) group or to a usual care group. Participants in the TASK group received a notebook containing skill building tips, a stress management workbook and a brochure on family caregiving, plus weekly phone calls from a nurse for a period of 8 weeks that involved discussion of patient identified priority areas. Participants in the control group received a brochure on family caregiving, as well as weekly calls from a nurse who did not provide any advice or information Caregivers in the intervention group were significantly more optimistic at 4, 8 and 12 week follow up, experienced significantly lower levels of task difficulty at 4 weeks and had significantly improved threat appraisal skills at 8 weeks and 12 weeks, although there were no significant changes in depressive symptoms, life changes or general health perception.
Studies assessing the impact of caregiver education and skills training have also reported the benefits of active or “hands-on” interventions. A randomized controlled trial by Kalra et al. (2004) allocated patient/caregiver dyads to receive structured caregiver training (hands-on training in basic nursing techniques that emphasized skills essential for daily management of ADL) or conventional instruction (information and advice). The length of the intervention was dependent on patient need, consisting of between three to five sessions in the inpatient rehabilitation setting. Patients experienced reductions in anxiety and depression at 12 months (P<0.001) and increased quality of life at 3 and 12 months (P<0.05). No differences between mortality, institutionalization or functional ability were reported between intervention and control groups. Using a similar intervention, Forster et al. (2013) randomized 928 patients, expected to return home following acute stroke, to participate in the London Stroke Carers Training course (LSCTC) (same protocol as Kalra et al. 2004), or to usual care. At 6 months there was no significant difference in the mean patient Nottingham EADL scores between groups (27.4 vs. 27.6, p=0.866) or Caregiver Burden Scores (45.5 vs. 45.0, p=0.660). While the intervention did not appear to be effective, the authors speculated that the timing, in the immediate period after stroke, might not be ideal.
The implementation of education and skills training programs ultimately aim to increase the self-efficacy of patients and informal caregivers for their own self-management. Lennon et al. (2013) conducted a systematic review of studies (including randomized and non-randomized controlled trials) that assessed “self-management” interventions for patients recovering from stroke. Interventions included in the review were quite variable, ranging from group programs to one-on-one interventions consisting of workbooks, DVDs or exercise sessions. Several interventions were based on the Stanford Chronic Disease Self-Management program, which consists of workshops, a companion book and a relaxation CD. However, due to the variability in outcomes assessed, pooling of results was not possible. Some of the largest randomized controlled trials included in the review demonstrated improvement in physical domains, quality of life, and dependency. A Cochrane review (Forster et al. 2007) included the results from 18 studies examining self-management programs for participants with multiple chronic conditions (e.g. arthritis, chronic pain, stroke, hypertension, heart failure etc.). There were small but statistically significant improvements in pain, disability, fatigue and depression and anxiety associated with the intervention group. There were also small but statistically significant increases in levels of exercise and in the frequency of practice of cognitive strategies for symptom management associated with the intervention.
The “Moving on After Stroke” (MOST) program is another example of a self-management focused program, consisting of 16 group sessions with an hour of education and an hour of exercise. Education sessions included topics such as secondary prevention, medications, sleep, nutrition, and self-management. Huijbregts et al. (2008) compared this program to the Living with Stroke (LWS) program that offered 6 group education sessions consisting of 90 minutes of education on topics such as the causes of stroke, physical effects, and therapies. There were no statistically significant differences in outcomes between the groups; however, patients in the MOST group had increases in FIM scores (F=3.97, P<0.05), improvements in the reintegration into normal living index (F=3.43, P<0.05) and improvements in the activity-specific balance scale (F=8.94, P<0.005).