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Introduction: Exercise training post-transplant has been shown to improve physical function and quality of life in solid organ transplant (SOT) recipients. Online resources in the form of websites and videos are commonly used to provide education and instruction on exercise and physical activity in SOT; however, the content and quality of these online resources has not been evaluated. Methods: The first 200 websites and videos identified on Google and YouTube using the English search term "exercise and physical activity in solid organ transplantation" were analyzed. Website and video content was evaluated based on 25 key components of exercise and physical activity in SOT as described in established exercise program recommendations. Website and video quality was determined using DISCERN, Global Quality Scale (GQS), and Patient Education Materials and Assessment Tool (PEMAT; threshold for which material is deemed understandable or actionable is >70%). Parametric and non-parametric tests were used to assess website and video characteristics, content, and quality metrics. Results: Forty-nine unique SOT websites (n = 15) and videos (n = 34) were identified, with the two most common categories being foundation/advocacy organizations and scientific resources. The average reading grade level of websites was 13 ± 3. Website and video content scores varied significantly (websites 11.3 ± 6.4; videos 8.4 ± 5.3). DISCERN total score and GQS score were low (median range for DISCERN 2.5-3.0; median for GQS 2.0 for both websites and videos, out of 5). PEMAT understandability and actionability scores were also low across websites and videos (mean range 57%-67% and 47%-65%, respectively). Foundation/advocacy websites had higher content and quality scores compared to scientific organizations and news/media articles. Conclusions: To our knowledge, this is the first comprehensive assessment of online content and quality of website and video resources on physical activity and exercise in adult SOT recipients. There were a limited number of online English patient-directed resources related to physical activity in SOT, most of which only partly captured items outlined in consensus exercise program recommendations and were of low quality and understandability and actionability. This work provides important insight to the English-speaking transplant community on the current state of online exercise health information and provides future direction for resource development.
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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.
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BACKGROUND: Patient-reported outcome measures (PROMs) are not routinely used in clinical care by pediatric liver transplant (LT) teams. The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) assessed feasibility of using a disease-specific Quality of Life (QoL) questionnaire in the ambulatory setting at 10 SNEPT sites. METHODS: A mixed methods feasibility project assessing administration processes, barriers, and user experiences with the Pediatric Liver Transplant Quality of Life (PeLTQL) tool. Iterative processes sought stakeholder feedback across four phases (Pilot, Extended Pilot, Development of a Mobile App PeLTQL version, and Pilot App use). RESULTS: A total of 149 patient-parent dyads completed the PeLTQL during LT clinic follow-up. Clinicians, parents, and patients evaluated and reported on feasibility of operationalization. Only two of 10 SNEPT sites continued PeLTQL administration after the initial two pilot phases. Reasons include limited clinical time and available personnel aggravated by the COVID-19 pandemic. In response, a mobile application version of the PeLTQL was initiated. Providing PeLTQL responses electronically was "very easy" or "easy" as reported by 96% (22/23) parents. CONCLUSIONS: Administration of a PROM into post-pediatric LT clinical care was feasible, but ongoing utilization stalled. Use of a mobile app towards facilitating completion of the PeLTQL outside of clinic hours may address the time and work-flow barriers identified.
