Patient and public involvement in an evidence synthesis project: description of and reflection on involvement

Background: We conducted an NIHR-funded evidence synthesis project, reviewing evidence relating to interventions for perceptual disorders following stroke. This related paper describes how people with lived experience of stroke-related perceptual disorders contributed to and influenced the project, and identifies lessons for future review projects.Methods: We planned our patient and public involvement and engagement (PPIE) activities within a study protocol, described according to the domains of the ACTIVE framework; these were founded on principles for good practice in PPIE. Activities occurred across the lifespan of the project, consisting primarily of group discussions and voting to determine if there was consensus. To assess impact and individual experiences, we sought feedback using an evaluation form after each discussion, and conducted an online meeting at the end of the project to allow further reflection.Results: We recruited five people to a Lived Experience Group, including two stroke survivors and three carers. Members attended one face-to-face meeting during the development of the review. Subsequent activities were all held online due to the COVID-19 pandemic; with six online meetings, plus email interactions. Positive impacts of the Lived Experience Group on the reviews included clear definitions of key terms, selection of outcome measures, agreement on implications of review findings, and identification of research recommendations. Key challenges identified related to the complexity of the topic and challenges in the use of new online technology as a consequence of the COVID-pandemic. Conclusions: A number of lessons were learned during this project. Specific recommendations for future PPIE are to ensure that those involved have an opportunity to get to know one another, and to provide optional sessions to increase familiarity with online meeting software, clear explanations of the purpose of involvement and specific feedback after each activity. These lessons should be considered when planning the PPIE within future reviews

Rehabilitation definition for research purposes. A global stakeholders’ initiative by Cochrane Rehabilitation

Negrini S, Selb M, Kiekens C, et al. Rehabilitation definition for research purposes. A global stakeholders initiative by Cochrane Rehabilitation. European Journal of Physical and Rehabilitation Medicine . 2022.Since its foundation, Cochrane Rehabilitation has faced challenges with rehabilitation definitions because existing definitions did not indicate what rehabilitation includes and what it excludes. We aimed to develop a comprehensive and shared rehabilitation definition for research purposes to: 1) support the conduct of primary studies and systematic reviews, and 2) identify relevant systematic reviews for knowledge translation purposes. We performed a multimodal study including seven preliminary research and discussion papers, four Consensus Meetings and three Delphi rounds with 80 rehabilitation stakeholders. The Delphi Study aimed to obtain agreement, refine and complete the items composing the definition and meanings of rehabilitation. These stakeholders covered 5 continents, representing 11 global and continental rehabilitation organizations, 11 scientific journals, 4 Cochrane Networks and 3 Cochrane Groups, and included invited experts, and representatives of low middle-income countries (LMICs) and consumers. We had a 70% to 82.5% response rate to the three Delphi rounds, during which participants responded to all items (100%) and provided relevant comments (range 5.5-50% per item). This participation led to several refinements to the rehabilitation definition through three preliminary versions, and the final items reached an agreement between 88.9% and 100%. We structured the definition using the PICO (Population, Intervention, Comparison, Outcome) framework. We concluded that "In a health care context," rehabilitation is defined as a "multimodal, person-centered, collaborative process" (Intervention-general), including interventions targeting a person's "capacity (by addressing body structures, functions, and activities/participation) and/or contextual factors related to performance" (Intervention-specific) with the goal of "optimizing" the "functioning" (Outcome) of "persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability" (Population). Rehabilitation requires that all the items of the definition are satisfied. We defined a "rehabilitation intervention" as "any intervention provided within the rehabilitation process." We developed a rehabilitation definition for research purposes achieving a broad agreement with global stakeholders. This definition provides explicit criteria to define rehabilitation. Using the proposed definition will improve rehabilitation research by standardizing the description of interventions. Our definition may require revision in the future, as further research enhances understanding and communication of the essence and complexity of rehabilitation

“Interest-holders”: A new term to replace “stakeholders” in the context of health research and policy

BackgroundGiven the colonial connotations of the term “stakeholder”, its continued use may be perceived as disrespectful to Indigenous Peoples. While several groups have introduced alternative terms, each has its own limitations. The objective of this article is to introduce “interest-holders” as an alternative term to “stakeholders” and describe the discussions underpinning the adoption of the new term by the MuSE Consortium.MethodsThe MuSE Consortium is an international network of over 160 individuals with interest and expertise in different aspects relevant to engagement in research. Members of MuSE explored alternative terms and considered their respective merits and limitations. The deliberations considered the literature on the topic and the results of two consultations with the wider MuSE membership on the alternative terms.ResultsWe define “interest-holders” as groups with legitimate interests in the health issue under consideration. The interests arise and draw their legitimacy from the fact that people from these groups are responsible for or affected by health-related decisions that can be informed by research evidence.ConclusionAs groups other than the MuSE Consortium have started to adopt “interest-holders,” we hope its use will reduce confusion related to the multitude of terms used and convey the intended meaning without any negative connotations

The influence of bias in randomized controlled trials on rehabilitation intervention effect estimates: what we have learned from meta-epidemiological studies

This study aimed to synthesize evidence from studies that addressed the influence of bias domains in randomized controlled trials on rehabilitation intervention effect estimates and discuss how these findings can maximize the trustworthiness of an RCT in rehabilitation. We screened studies about the influence of bias on rehabilitation intervention effect estimates published until June 2023. The characteristics and results of the included studies were categorized based on methodological characteristics and summarized narratively. We included seven studies with data on 227,806 RCT participants. Our findings showed that rehabilitation intervention effect estimates are likely exaggerated in trials with inadequate/unclear sequence generation and allocation concealment when using continuous outcomes. The influence of blinding was inconsistent and different from the rest of medical science, as meta-epidemiological studies showed overestimation, underestimation, or neutral associations for different types of blinding on rehabilitation treatment effect estimates. Still, it showed a more consistent pattern when looking at patient-reported outcomes. The impact of attrition bias and intention to treat has been analyzed only in two studies with inconsistent results. The risk of reporting bias seems to be associated with overestimation of treatment effects. Bias domains can influence rehabilitation treatment effects in different directions. The evidence is mixed and inconclusive due to the poor methodological quality of RCTs and the limited number and quality of studies looking at the influence of bias and treatment effects in rehabilitation. Further studies about the influence of bias in RCTs on rehabilitation intervention effect estimates are needed

Is trunk training effective at improving ability in activities of daily living and function of people who have had a stroke? A Cochrane Review summary with commentary

BACKGROUND:Effective trunk control is an essential component of sitting and standing balance, and is a key requirement for movement of the head and limbs, and for carrying out functional tasks. A stroke can result in impaired trunk control, affected by stroke-related deficits in balance, muscle function, coordination and position sense. Recovery of trunk control is recognised as a key goal of stroke rehabilitation.OBJECTIVE:To evaluate the effectiveness of trunk training interventions in people with stroke.METHODS:A summary of the Cochrane Review by Thijs et al. (2023), with comments from a rehabilitation perspective.RESULTS:68 studies (2585 participants) were included in the Cochrane review. Trunk training was not found to have any benefit on measures of ADL, when compared to other dose-matched therapies, but did improve trunk function and other outcomes. Trunk training was more beneficial than non-dose-matched therapies for measures of ADL, trunk function, and other outcomes. The certainty of these findings is very low.CONCLUSION:Evidence supports the use of trunk training as part of stroke rehabilitation. However certainty in these findings is very low due to volume, quality and heterogeneity of the evidence.<br/

Public involvement and engagement across health and care research projects at UK universities – a cross-sectional study protocol.

PhD cross sectional study protocol to explore public involvement and engagement across UK universities

Evidence on public involvement and engagement in adult health and care research in the United Kingdom - a scoping review protocol.

PhD Scoping revie