RESUMO
BACKGROUND: Impactful, evidence-based solutions in surveillance, prevention, acute care, and rehabilitation for stroke survivors are required to address the high global burden of stroke. Patient and public involvement (PPI), where patients, their families, and the public are actively involved as research partners, enhances the relevance, credibility, and impact of stroke-related research. AIMS: This scoping review, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Scoping Review guidelines, aims to identify and summarize how PPI is currently implemented and reported in empirical stroke research using a participatory approach. SUMMARY OF REVIEW: A comprehensive search strategy was developed and implemented across Medline, CINAHL, EMBASE, PsynchINFO, and Cochrane electronic databases, supplemented by gray literature searches. Empirical stroke research articles in the English language, published from 2014 up to 2023, and documenting PPI activity were included. Of the 18,143 original articles identified, 2824 full-text manuscripts matching from this time window were screened. Only 2% (n = 72) of these directly reported embedded PPI activity in empirical research. The majority were qualitative in design (60%) and conducted in high-income countries (96%). Only one included study originated from a developing country, where the burden of stroke is highest. Most studies (94%) provided some information about the activities carried out with their PPI partners, mainly centered on the study design (57%) and management (64%), with only 4% of studies integrating PPI across all research cycle phases from funding application to dissemination. When studies were examined for compliance with the Guidance for Reporting Involvement of Patients and the Public (GRIPP) short-form checklist, only 11% of included studies were 100% compliant. Twenty-one studies (29%) reported barriers and facilitators to including PPI in stroke research. Organization, authentic partnership, and experienced PPI representatives were common facilitators and identified barriers reflected concerns around adequate funding, time required, and diversity in perspectives. A positive reporting bias for PPI impact was observed, summarized as keeping the patient perspective central to the research process, improved care of study participants, validation of study findings, and improved communication/lay-summaries of complex research concepts. CONCLUSIONS: PPI is underutilized and inconsistently reported in current empirical stroke research. PPI must become more widely adopted, notably in low- and middle-income countries. Consensus-driven standards for inclusion of PPI by funding organizations and publishers are required to support its widespread adoption.
RESUMO
INTRODUCTION: Despite the increased use of telehealth interventions, low-level evidence supports their use for behavior change and self-management in stroke secondary prevention. Therefore, this overview of systematic reviews (SRs) critically appraises and consolidates the evidence about theoretically-informed telehealth interventions in stroke secondary prevention. METHODS: Two phases were conducted independently by two reviewers. Phase-1 included SRs contemplating randomized controlled trials (RCTs) implementing telehealth interventions with individuals post-stroke, targeting cardiovascular events, risk-reducing health behaviors or physiological risk factors. Phase-2 interrogated RCTs from these SRs that implemented theoretically-informed interventions. Best-evidence synthesis of published meta-analyses and new meta-analyses of theoretically-informed interventions were conducted. GRADE evidence was applied. RESULTS: In Phase-1 (15 SRs), best-evidence synthesis identified telehealth interventions as effective in reducing recurrent angina and recurrent stroke rates (both with very low GRADE), improving medication adherence (low GRADE), physical activity participation (very low GRADE), and blood pressure targets (very low GRADE), reducing systolic blood pressure (SBP) (moderate GRADE) and low-density lipoprotein levels (very low GRADE). In Phase-2 (14 RCTs), new meta-analyses identified theoretically-informed telehealth interventions as effective in improving medication adherence (SMD: 0.38; 95%CI: 0.13-0.64; I²: 72%, low GRADE) and healthy eating (SMD: 0.38; 95%CI: 0.15-0.60; I²: 38%, low GRADE), and decreasing SBP (MD: -9.19; 95%CI: -5.49 to -12.89; I²: 0%, moderate GRADE). DISCUSSION: Telehealth demonstrates utility in stroke secondary prevention, notably in SBP reduction. High-quality RCTs are required given the lack of current evidence supporting theoretically-informed telehealth interventions addressing primary outcomes of secondary prevention, and the low certainty evidence identified for health behavior change.