Recommended characteristics and processes for writing lay summaries of healthcare evidence: a co-created scoping review and consultation exercise.

BACKGROUND: Lay summaries (LSs) of scientific evidence are critical to sharing research with non-specialist audiences. This scoping review with a consultation exercise aimed to (1) Describe features of the available LS resources; (2) Summarize recommended LS characteristics and content; (3) Outline recommended processes to write a LS; and (4) Obtain stakeholder perspectives on LS characteristics and writing processes. METHODS: This project was a patient and public partner (PPP)-initiated topic co-led by a PPP and a researcher. The team was supported by three additional PPPs and four researchers. A search of peer-reviewed (Ovid MEDLINE, Scopus, Embase, Cochrane libraries, CINAHL, PsycINFO, ERIC and PubMed data bases) and grey literature was conducted using the Joanna Briggs Institute Methodological Guidance for Scoping Reviews to include any resource that described LS characteristics and writing processes. Two reviewers screened and extracted all resources. Resource descriptions and characteristics were organized by frequency, and processes were inductively analyzed. Nine patient and public partners and researchers participated in three consultation exercise sessions to contextualize the review findings. RESULTS: Of the identified 80 resources, 99% described characteristics of a LS and 13% described processes for writing a LS. About half (51%) of the resources were published in the last two years. The most recommended characteristics were to avoid jargon (78%) and long or complex sentences (60%). The most frequently suggested LS content to include was study findings (79%). The key steps in writing a LS were doing pre-work, preparing for the target audience, writing, reviewing, finalizing, and disseminating knowledge. Consultation exercise participants prioritized some LS characteristics differently compared to the literature and found many characteristics oversimplistic. Consultation exercise participants generally supported the writing processes found in the literature but suggested some refinements. CONCLUSIONS: Writing LSs is potentially a growing area, however, efforts are needed to enhance our understanding of important LS characteristics, create resources with and for PPPs, and develop optimal writing processes.

This study was suggested by a patient partner to place attention on the role patient and public partners (PPPs) could play in developing lay summaries. A lay summary (LS) is a summary of a research project written for members of the public, including patients. A lot of information is written about recommendations for LSs, but none of it has been summarized. This study: (1) Pulled together and summarized all existing resources that made recommendations on features of LSs and/or the steps for writing them; and (2) Conducted meetings with people interested in LSs (PPPs and researchers) to gather their perspectives on this summary of resources. The study engaged PPPs in all aspects, including co-leadership. We found 80 resources on LSs. Almost all (95%) of the resources were written by researchers for researchers, with only 18% involving PPPs. The most common recommendations were to avoid jargon (78%) and remove unnecessary and complex words (60%). Only 13% of the resources had information about the steps for writing a LS. People in our meetings did not always agree with the recommended LS characteristics and found them overly simplistic. They felt that identifying and writing for the intended audience of the LS was important, every study should have a LS, PPPs should have the opportunity to be involved, and greater attention should be paid to the steps involved in writing a LS. Lay summary development is a complex, multistep process requiring the inclusion of PPPs for their irreplaceable perspectives and contributions.

Supporting patient and public partners in writing lay summaries of scientific evidence in healthcare: a scoping review protocol.

INTRODUCTION: Despite growing interest among patient and public partners to engage in writing lay summaries, evidence is scarce regarding the availability of resources to support them. This protocol describes the process of conducting a scoping review to: (1) summarise the source, criteria and characteristics, content, format, intended target audience, patient and public involvement in preparing guidance and development processes in the available guidance for writing lay summaries; (2) contextualise the available guidance to the needs/preferences of patient and public partners and (3) create a patient and public partner-informed output to support their engagement in writing lay summaries. METHOD AND ANALYSIS: A scoping review with an integrated knowledge translation approach will be used to ensure the collaboration between patient/public partners and researchers in all steps of the review. To meet objective 1, the English language evidence within a healthcare context that provides guidance for writing lay summaries will be searched in peer-reviewed publications and grey literature. All screening and extraction steps will be performed independently by two reviewers. Extracted data will be organised by adapting the European Union's principles for summaries of clinical trials for laypersons. For objectives 2 and 3, a consultation exercise will be held with patient and public partners to review and contextualise the findings from objective 1. A directed content analysis will be used to organise the data to the needs of the public audience. Output development will follow based on the results. ETHICS AND DISSEMINATION: Ethics approval will be obtained for the consultation exercise. Our target audience will be stakeholders who engage or are interested in writing lay summaries. Our dissemination products will include a manuscript, a lay summary and an output to support patient and public partners with writing lay summaries. Findings will be published in a peer-reviewed journal and presented at relevant conferences. OPEN SCIENCE FRAMEWORK REGISTRATION: osf.io/2dvfg.

Representation in rehabilitation research of adults with traumatic brain injury and depression: A scoping review.

Objective: To determine how well comorbid depression is described, defined, and measured in the rehabilitation literature that pertains to TBI and depression.Method: Scoping review of the rehabilitation sciences literature. Six databases were searched (to October 17, 2018) using the three core concepts of TBI, depression, and rehabilitation, as was for gray literature. Two independent reviewers reviewed documents for eligibility.Results: 3737 records were reviewed and 137 documents were analyzed. Primary studies (n = 126) were most prevalent and of quantitative descriptive design (n = 102). The number of participants with TBI and comorbid depression could only be determined for 81/126 (64%) of primary studies, in which they are the minority (median of 30% of sample). Depression reporting was heterogeneous and individuals with TBI and depression were not analyzed as a subgroup in most studies (n = 68, 55%). Depression self-report instruments are commonly used (14 instruments used in 111 studies). Few studies (n = 14, 19%) have participant samples with discrete severity levels of TBI and depression.Conclusions: Better participant representation and reporting of TBI and depression variables are needed to enhance comparability across studies and improve rehabilitation outcomes.

Scoping Review on Rehabilitation Scoping Reviews.

OBJECTIVE: To examine the extent, scope, and methodological quality of rehabilitation scoping reviews. DATA SOURCES: A comprehensive list of scoping reviews conducted in the broader health field (inception to July 2014), with a further update of that list (up to February 2017) using similar methods, including searching 9 electronic databases. STUDY SELECTION: Articles were included if they were scoping reviews within rehabilitation. Established review methods were used including (1) a PubMed filter detecting rehabilitation content and (2) title-and-abstract screening by 2 independent reviewers applied sequentially to articles from the existing list of scoping reviews and to the updated search results. Full-text articles were reviewed by 1 reviewer, with discrepancies resolved by another after pilot screening with > 80% agreement. Remaining discrepancies were resolved by external experts. DATA EXTRACTION: Two independent reviewers used piloted and standardized data extraction forms. DATA SYNTHESIS: We screened 1823 records, including 992 full texts, to identify 251 rehabilitation-related scoping reviews. Rehabilitation scoping reviews had an exponential yearly increase since 2008 (r2=0.89; P<.01). The literature addressed diverse topics (eg, spread over 43 condition groupings); 43% were published in Canada. Examples of methodological limitations included: 39% of reviews did not cite the use of a methodological framework, 96% did not include the appropriate flow diagram, 8% did not report eligibility criteria, and 57% did not report data extraction details. CONCLUSIONS: The increasing popularity of scoping reviews in rehabilitation has not been met by high standards in methodological quality. To increase the value of rehabilitation scoping reviews, rehabilitation stakeholders need to use existing methodological standards for the conduct, reporting, and appraisal of scoping reviews.

Cognitive interventions for adults with chronic kidney disease: protocol for a scoping review.

BACKGROUND: Cognitive impairment is a common and frequently under-recognized complication of chronic kidney disease (CKD). Although there is extensive literature on cognitive interventions that can ameliorate cognitive impairment or associated negative outcomes in the general literature, the breadth and characteristics of cognitive interventions that have been studied in people with CKD are currently unclear. The objective of this scoping review is to identify and describe the literature on cognitive interventions for adults with CKD, including end-stage kidney disease (ESKD). METHODS: A scoping review following Joanna Briggs Institute methodology will be conducted. With assistance from an information specialist, we will search 5 electronic databases (MEDLINE [OVID], EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and CINAHL Plus) using search terms that represent the target population (CKD) and concept (cognition), and conduct backward citation searching for additional literature. Eligible sources will be primary research studies (quantitative or qualitative) that investigate any intervention targeting cognition in adults (≥ 18 years) with CKD or ESKD, including those treated with dialysis. We will extract data about characteristics of interventions (e.g., type, underlying theory, design, location, and provider), populations (e.g., stage of CKD, age, sex, and type of cognitive impairment), and studies (e.g., authors, location, design, and reported findings). Article screening and data extraction will be performed by two to three reviewers. Data will be analyzed using descriptive statistics and narrative syntheses to characterize the literature on cognitive interventions for people with CKD. DISCUSSION: This study will provide a comprehensive overview of the cognitive interventions that have been studied for people with CKD. It will help identify research gaps within this population (e.g., types of interventions that have yet to be investigated; best practices in cognition research that have not been implemented) and inform the direction of future research in this field.

Effects of salt, polyethylene glycol, and locked nucleic acids on the thermodynamic stabilities of consecutive terminal adenosine mismatches in RNA duplexes.

Consecutive terminal mismatches add thermodynamic stability to RNA duplexes and occur frequently in microRNA-mRNA interactions. Accurate thermodynamic stabilities of consecutive terminal mismatches contribute to the development of specific, high-affinity siRNA therapeutics. Consecutive terminal adenosine mismatches (TAMS) are studied at different salt concentrations, with polyethylene glycol cosolutes, and with locked nucleic acid (LNA) substitutions. These measurements provide benchmarks for the application of thermodynamic predictions to different physiological or therapeutic conditions. The salt dependence for RNA duplex stability is similar for TAMS, internal loops, and Watson-Crick duplexes. A unified model for predicting the free energy of an RNA duplex with or without loops and mismatches at lower sodium concentrations is presented. The destabilizing effects of PEG 200 are larger for TAMS than internal loops or Watson-Crick duplexes, which may result from different base stacking conformations, dynamics, and water hydration. In contrast, LNA substitutions stabilize internal loops much more than TAMS. Surprisingly, the average per adenosine increase in stability for LNA substitutions in internal loops is -1.82 kcal/mol and only -0.20 kcal/mol for TAMS. The stabilities of TAMS and internal loops with LNA substitutions have similar favorable free energies. Thus, the unfavorable free energy of adenosine internal loops is largely an entropic effect. The favorable stabilities of TAMS result mainly from base stacking. The ability of RNA duplexes to form extended terminal mismatches in the absence of proteins such as argonaute and identifying the enthalpic contributions to terminal mismatch stabilities provide insight into the physical basis of microRNA-mRNA molecular recognition and specificity.