A national survey of children's experiences and needs when attending Canadian pediatric emergency departments.

BACKGROUND: Optimizing a child's emergency department (ED) experience positively impacts their memories and future healthcare interactions. Our objectives were to describe children's perspectives of their needs and experiences during their ED visit and relate this to their understanding of their condition. METHODS: 514 children, aged 7-17 years, and their caregivers presenting to 10 Canadian pediatric EDs completed a descriptive cross-sectional survey from 2018-2020. RESULTS: Median child age was 12.0 years (IQR 9.0-14.0); 56.5% (290/513) were female. 78.8% (398/505) reported adequate privacy during healthcare conversations and 78.3% (395/504) during examination. 69.5% (348/501) understood their diagnosis, 89.4% (355/397) the rationale for performed tests, and 67.2% (338/503) their treatment plan. Children felt well taken care of by nurses (90.9%, 457/503) and doctors (90.8%, 444/489). Overall, 94.8% (475/501) of children were happy with their ED visit. Predictors of a child better understanding their diagnosis included doctors talking directly to them (OR 2.21 [1.15, 4.28]), having someone answer questions and worries (OR 2.51 [1.26, 5.01]), and older age (OR 1.08 [1.01, 1.16]). Direct communication with a doctor (OR 2.08 [1.09, 3.99]) was associated with children better understanding their treatment, while greater fear/ 'being scared' at baseline (OR 0.59 [0.39, 0.89]) or at discharge (OR 0.46 [0.22, 0.96]) had the opposite effect. INTERPRETATION: While almost all children felt well taken care of and were happy with their visit, close to 1/3 did not understand their diagnosis or its management. Children's reported satisfaction in the ED should not be equated with understanding of their medical condition. Further, caution should be employed in using caregiver satisfaction as a proxy for children's satisfaction with their ED visit, as caregiver satisfaction is highly linked to having their own needs being met.

Protocol for the development of a reporting guideline for umbrella reviews on epidemiological associations using cross-sectional, case-control and cohort studies: the Preferred Reporting Items for Umbrella Reviews of Cross-sectional, Case-control and Cohort studies (PRIUR-CCC).

INTRODUCTION: Observational studies are fraught with several biases including reverse causation and residual confounding. Overview of reviews of observational studies (ie, umbrella reviews) synthesise systematic reviews with or without meta-analyses of cross-sectional, case-control and cohort studies, and may also aid in the grading of the credibility of reported associations. The number of published umbrella reviews has been increasing. Recently, a reporting guideline for overviews of reviews of healthcare interventions (Preferred Reporting Items for Overviews of Reviews (PRIOR)) was published, but the field lacks reporting guidelines for umbrella reviews of observational studies. Our aim is to develop a reporting guideline for umbrella reviews on cross-sectional, case-control and cohort studies assessing epidemiological associations. METHODS AND ANALYSIS: We will adhere to established guidance and prepare a PRIOR extension for systematic reviews of cross-sectional, case-control and cohort studies testing epidemiological associations between an exposure and an outcome, namely Preferred Reporting Items for Umbrella Reviews of Cross-sectional, Case-control and Cohort studies (PRIUR-CCC). Step 1 will be the project launch to identify stakeholders. Step 2 will be a literature review of available guidance to conduct umbrella reviews. Step 3 will be an online Delphi study sampling 100 participants among authors and editors of umbrella reviews. Step 4 will encompass the finalisation of PRIUR-CCC statement, including a checklist, a flow diagram, explanation and elaboration document. Deliverables will be (i) identifying stakeholders to involve according to relevant expertise and end-user groups, with an equity, diversity and inclusion lens; (ii) completing a narrative review of methodological guidance on how to conduct umbrella reviews, a narrative review of methodology and reporting in published umbrella reviews and preparing an initial PRIUR-CCC checklist for Delphi study round 1; (iii) preparing a PRIUR-CCC checklist with guidance after Delphi study; (iv) publishing and disseminating PRIUR-CCC statement. ETHICS AND DISSEMINATION: PRIUR-CCC has been approved by The Ottawa Health Science Network Research Ethics Board and has obtained consent (20220639-01H). Participants to step 3 will give informed consent. PRIUR-CCC steps will be published in a peer-reviewed journal and will guide reporting of umbrella reviews on epidemiological associations.

Developments in the Design, Conduct, and Reporting of Child Health Trials.

To identify priority areas to improve the design, conduct, and reporting of pediatric clinical trials, the international expert network, Standards for Research (StaR) in Child Health, was assembled and published the first 6 Standards in Pediatrics in 2012. After a recent review summarizing the 247 publications by StaR Child Health authors that highlight research practices that add value and reduce research "waste," the current review assesses the progress in key child health trial methods areas: consent and recruitment, containing risk of bias, roles of data monitoring committees, appropriate sample size calculations, outcome selection and measurement, and age groups for pediatric trials. Although meaningful change has occurred within the child health research ecosystem, measurable progress is still disappointingly slow. In this context, we identify and review emerging trends that will advance the agenda of increased clinical usefulness of pediatric trials, including patient and public engagement, Bayesian statistical approaches, adaptive designs, and platform trials. We explore how implementation science approaches could be applied to effect measurable improvements in the design, conducted, and reporting of child health research.

Seeking Care for Children with Intellectual and/or Developmental Disabilities in the Emergency Department: A Mixed Methods Systematic Review of Parents' Experiences and Information Needs.

The objective of this review was to explore parents' experiences and information needs regarding management of their child with an intellectual and/or developmental disability (IDD) in the emergency department (ED). We searched six electronic databases and grey literature to identify primary studies in English published since 2000. We synthesized quantitative and qualitative outcome data simultaneously using a convergent integrated approach and used a Mixed Methods Appraisal Tool (MMAT) to assess methodological quality of the included studies. Nine articles derived from seven studies were included (3 qualitative, 3 quantitative, 1 mixed method). Four main themes related to parents' self-reported experiences were identified: 1) appropriateness of the ED to manage and support their child; 2) acknowledgement/recognition of their child's IDD and incorporation of those considerations into overall care and management; 3) managing and navigating the ED environment; and 4) decision to disclose their child's condition when visiting the ED. Two articles provided data relevant to information needs, highlighting parents' desire to have resources supporting ED orientation and access to services within and outside of the ED setting. From the limited number of studies, it was evident that parents wanted better communication with healthcare providers and a greater understanding by ED staff around physical space settings needed to support their child. Resources supporting ED staff and parents to communicate effectively and work together can ensure that children with IDDs care needs are met. Further research into understanding parents' experiences and information needs related to managing a child with an IDD in the ED is needed to guide the development of effective resources.

Patient preferences for breast cancer screening: a systematic review update to inform recommendations by the Canadian Task Force on Preventive Health Care.

BACKGROUND: Different guideline panels, and individuals, may make different decisions based in part on their preferences. Preferences for or against an intervention are viewed as a consequence of the relative importance people place on the expected or experienced health outcomes it incurs. These findings can then be considered as patient input when balancing effect estimates on benefits and harms reported by empirical evidence on the clinical effectiveness of screening programs. This systematic review update examined the relative importance placed by patients on the potential benefits and harms of mammography-based breast cancer screening to inform an update to the 2018 Canadian Task Force on Preventive Health Care's guideline on screening. METHODS: We screened all articles from our previous review (search December 2017) and updated our searches to June 19, 2023 in MEDLINE, PsycINFO, and CINAHL. We also screened grey literature, submissions by stakeholders, and reference lists. The target population was cisgender women and other adults assigned female at birth (including transgender men and nonbinary persons) aged ≥ 35 years and at average or moderately increased risk for breast cancer. Studies of patients with breast cancer were eligible for health-state utility data for relevant outcomes. We sought three types of data, directly through (i) disutilities of screening and curative treatment health states (measuring the impact of the outcome on one's health-related quality of life; utilities measured on a scale of 0 [death] to 1 [perfect health]), and (ii) other preference-based data, such as outcome trade-offs, and indirectly through (iii) the relative importance of benefits versus harms inferred from attitudes, intentions, and behaviors towards screening among patients provided with estimates of the magnitudes of benefit(s) and harms(s). For screening, we used machine learning as one of the reviewers after at least 50% of studies had been reviewed in duplicate by humans; full-text selection used independent review by two humans. Data extraction and risk of bias assessments used a single reviewer with verification. Our main analysis for utilities used data from utility-based health-related quality of life tools (e.g., EQ-5D) in patients; a disutility value of about 0.04 can be considered a minimally important value for the Canadian public. When suitable, we pooled utilities and explored heterogeneity. Disutilities were calculated for screening health states and between different treatment states. Non-utility data were grouped into categories, based on outcomes compared (e.g. for trade-off data), participant age, and our judgements of the net benefit of screening portrayed by the studies. Thereafter, we compared and contrasted findings while considering sample sizes, risk of bias, subgroup findings and data on knowledge scores, and created summary statements for each data set. Certainty assessments followed GRADE guidance for patient preferences and used consensus among at least two reviewers. FINDINGS: Eighty-two studies (38 on utilities) were included. The estimated disutilities were 0.07 for a positive screening result (moderate certainty), 0.03-0.04 for a false positive (FP; "additional testing" resolved as negative for cancer) (low certainty), and 0.08 for untreated screen-detected cancer (moderate certainty) or (low certainty) an interval cancer. At ≤12 months, disutilities of mastectomy (vs. breast-conserving therapy), chemotherapy (vs. none) (low certainty), and radiation therapy (vs. none) (moderate certainty) were 0.02-0.03, 0.02-0.04, and little-to-none, respectively, though in each case findings were somewhat limited in their applicability. Over the longer term, there was moderate certainty for little-to-no disutility from mastectomy versus breast-conserving surgery/lumpectomy with radiation and from radiation. There was moderate certainty that a majority (>50%) and possibly a large majority (>75%) of women probably accept up to six cases of overdiagnosis to prevent one breast-cancer death; there was some uncertainty because of an indication that overdiagnosis was not fully understood by participants in some cases. Low certainty evidence suggested that a large majority may accept that screening may reduce breast-cancer but not all-cause mortality, at least when presented with relatively high rates of breast-cancer mortality reductions (n = 2; 2 and 5 fewer per 1000 screened), and at least a majority accept that to prevent one breast-cancer death at least a few hundred patients will receive a FP result and 10-15 will have a FP resolved through biopsy. An upper limit for an acceptable number of FPs was not evaluated. When using data from studies assessing attitudes, intentions, and screening behaviors, across all age groups but most evident for women in their 40s, preferences reduced as the net benefit presented by study authors decreased in magnitude. In a relatively low net-benefit scenario, a majority of patients in their 40s may not weigh the benefits as greater than the harms from screening whereas for women in their 50s a large majority may prefer screening (low certainty evidence for both ages). There was moderate certainty that a large majority of women 50 years of age and 50 to 69 years of age, who have usually experienced screening, weigh the benefits as greater than the harms from screening in a high net-benefit scenario. A large majority of patients aged 70-71 years who have recently screened probably think the benefits outweigh the harms of continuing to screen. A majority of women in their mid-70s to early 80s may prefer to continue screening. CONCLUSIONS: Evidence across a range of data sources on how informed patients value the potential outcomes from breast-cancer screening will be useful during decision-making for recommendations. The evidence suggests that all of the outcomes examined have importance to women of any age, that there is at least some and possibly substantial (among those in their 40s) variability across and within age groups about the acceptable magnitude of effects across outcomes, and that provision of easily understandable information on the likelihood of the outcomes may be necessary to enable informed decision making. Although studies came from a wide range of countries, there were limited data from Canada and about whether findings applied well across an ethnographically and socioeconomically diverse population. SYSTEMATIC REVIEW REGISTRATION: Protocol available at Open Science Framework https://osf.io/xngsu/ .

Pain experiences of marginalized children in the emergency department: A scoping review protocol.

INTRODUCTION: Pain affects all children, and in hospitals across North America, this pain is often undertreated. Children who visit the emergency department (ED) experience similar undertreatment, and they will often experience a painful procedure as part of their diagnostic journey. Further, children and their caregivers who experience social injustices through marginalization are more likely to experience healthcare disparities in their pain management. Still, most of our knowledge about children's pain management comes from research focused on well-educated, white children and caregivers from a middle- or upper-class background. The aim of this scoping review is to identify, map, and describe existing research on (a) how aspects of marginalization are documented in randomized controlled trials related to children's pain and (b) to understand the pain treatment and experiences of marginalized children and their caregivers in the ED setting. METHODS AND ANALYSIS: The review will follow Joanna Briggs Institute methodology for scoping reviews using the Participant, Concept, Context (PCC) framework and key terms related to children, youth, pain, ED, and aspects of marginalization. We will search Medline, Embase, PsychInfo, CINAHL, Web of Science, Cochrane Library Trials, iPortal, and Native Health Database for articles published in the last 10 years to identify records that meet our inclusion criteria. We will screen articles in a two-step process using two reviewers during the abstract and full-text screening stages. Data will be extracted using Covidence for data management and we will use a narrative approach to synthesize the data. ETHICS AND DISSEMINATION: Ethical approval is not required for this review. Findings will be disseminated in academic manuscripts, at academic conferences, and with partners and knowledge users including funders of pain research and healthcare professionals. Results of this scoping review will inform subsequent quantitative and qualitative studies regarding pain experiences and treatment of marginalized children in the ED.

"There is a strangeness in this disease": A qualitative study of parents' experiences caring for a child diagnosed with COVID-19.

BACKGROUND: The beginning of the COVID-19 pandemic marked a period of uncertainty as public health guidelines, diagnostic criteria, and testing protocols or procedures have continuously evolved. Despite the virus being declared a worldwide pandemic, little research has been done to understand how parents manage caring for their child diagnosed with COVID-19. We sought to understand parents' experiences and information need when caring for a child diagnosed with COVID-19. METHODS: A qualitative descriptive study with an inductive and exploratory approach was completed. Participants were recruited through social media and local public health clinics. Data collection and analysis were concurrent. Semi-structured virtual interviews were conducted with 27 participants. Thematic analysis was conducted. FINDINGS: Four major themes emerged: a) dealing with uncertainty; b) anxiety; c) social stigma and stress; d) a sense of community. CONCLUSION: Our study highlights that parent experiences were diverse and multi-faceted, and their experiences evolved and shifted over the course of the pandemic. Parents would benefit from clear and consistent evidence-based online information. Understanding the perspectives of parents caring for a child with COVID-19 is an important step in developing future resources tailored to meet their unique experiences and information needs.

Screening for lung cancer with computed tomography: protocol for systematic reviews for the Canadian Task Force on Preventive Health Care.

PURPOSE: Lung cancer is the leading cause of cancer deaths in Canada, and because early cancers are often asymptomatic screening aims to prevent mortality by detecting cancer earlier when treatment is more likely to be curative. These reviews will inform updated recommendations by the Canadian Task Force on Preventive Health Care on screening for lung cancer. METHODS: We will update the review on the benefits and harms of screening with CT conducted for the task force in 2015 and perform de novo reviews on the comparative effects between (i) trial-based selection criteria and use of risk prediction models and (ii) trial-based nodule classification and different nodule classification systems and on patients' values and preferences. We will search Medline, Embase, and Cochrane Central (for questions on benefits and harms from 2015; comparative effects from 2012) and Medline, Scopus, and EconLit (for values and preferences from 2012) via peer-reviewed search strategies, clinical trial registries, and the reference lists of included studies and reviews. Two reviewers will screen all citations (including those in the previous review) and base inclusion decisions on consensus or arbitration by another reviewer. For benefits (i.e., all-cause and cancer-specific mortality and health-related quality of life) and harms (i.e., overdiagnosis, false positives, incidental findings, psychosocial harms from screening, and major complications and mortality from invasive procedures as a result of screening), we will include studies of adults in whom lung cancer is not suspected. We will include randomized controlled trials comparing CT screening with no screening or alternative screening modalities (e.g., chest radiography) or strategies (e.g., CT using different screening intervals, classification systems, and/or patient selection via risk models or biomarkers); non-randomized studies, including modeling studies, will be included for the comparative effects between trial-based and other selection criteria or nodule classification methods. For harms (except overdiagnosis) we will also include non-randomized and uncontrolled studies. For values and preferences, the study design may be any quantitative design that either directly or indirectly measures outcome preferences on outcomes pertaining to lung cancer screening. We will only include studies conducted in Very High Human Development Countries and having full texts in English or French. Data will be extracted by one reviewer with verification by another, with the exception of result data on mortality and cancer incidence (for calculating overdiagnosis) where duplicate extraction will occur. If two or more studies report on the same comparison and it is deemed suitable, we will pool continuous data using a mean difference or standardized mean difference, as applicable, and binary data using relative risks and a DerSimonian and Laird model unless events are rare (< 1%) where we will pool odds ratios using Peto's method or (if zero events) the reciprocal of the opposite treatment arm size correction. For pooling proportions, we will apply suitable transformation (logit or arcsine) depending on the proportions of events. If meta-analysis is not undertaken we will synthesize the data descriptively, considering clinical and methodological differences. For each outcome, two reviewers will independently assess within- and across-study risk of bias and rate the certainty of the evidence using GRADE (Grading of Recommendations Assessment, Development, and Evaluation), and reach consensus. DISCUSSION: Since 2015, additional trials and longer follow-ups or additional data (e.g., harms, specific patient populations) from previously published trials have been published that will improve our understanding of the benefits and harms of screening. The systematic review of values and preferences will allow fulsome insights that will inform the balance of benefits and harms. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42022378858.

Parents' User Experience Accessing and Using a Web-Based Map of COVID-19 Recommendations for Health Decision-Making: Qualitative Descriptive Study.

BACKGROUND: The eCOVID19 Recommendations Map & Gateway to Contextualization (RecMap) website was developed to identify all COVID-19 guidelines, assess the credibility and trustworthiness of the guidelines, and make recommendations understandable to various stakeholder groups. To date, little has been done to understand and explore parents' experiences when accessing and using the RecMap website for COVID-19 health decision-making. OBJECTIVE: To explore (1) where parents look for COVID-19 health information and why, (2) parents' user experience when accessing and using the RecMap website to make health decisions, and (3) what knowledge mobilization activities are needed to increase parents' awareness, use, and engagement with the RecMap website. METHODS: We conducted a qualitative descriptive study using semistructured interviews and a think-aloud activity with parents of children aged 18 years or younger living in Canada. Participants were asked to provide feedback on the RecMap website and to "think aloud" as they navigated the website to find relevant COVID-19 health recommendations. Demographic information was collected using a web-based questionnaire. A hybrid deductive and inductive thematic approach guided analysis and data synthesis. RESULTS: A total of 21 participants (13/21, 62% mothers) were interviewed and participated in a think-aloud activity. The data were categorized into four sections, representative of key elements that deductively and inductively emerged from the data: (1) parent information seeking behaviors and preferences for COVID-19, (2) RecMap website usability, (3) perceived usefulness of the RecMap website, and (4) knowledge mobilization strategies to increase awareness, use, and engagement of the RecMap website. Parents primarily used the internet to find COVID-19 information and focused on sources that they determined to be credible, trustworthy, simple, and engaging. As the pandemic evolved, participants' information-seeking behaviors changed, specifically their topics of interest and search frequency. Most parents were not aware of the RecMap website before this study but found satisfaction with its concept and layout and expressed intentions to use and share it with others. Parents experienced some barriers to using the RecMap website and suggested key areas for improvement to facilitate its usability and perceived usefulness. Recommendations included a more user-friendly home page for lay audiences (separate public-facing user interface), improving the search and filter options, quicker navigation, clearer titles, more family-friendly graphics, and improving mobile-friendly access. Several strategies to disseminate the RecMap website were also expressed, including a mix of traditional and nontraditional methods (handouts and social media) in credible and high-traffic locations that parents frequent often. CONCLUSIONS: Overall, parents liked the concept of the RecMap website but had some suggestions to improve its usability (language, navigation, and website interface). These findings can be used to improve the RecMap website for parents and offer insight for the development and dissemination of effective web-based health information tools and resources for the general public.

Consequences of the Coronavirus disease 2019 pandemic on child and adolescent mental, psychosocial, and physical health: A scoping review and interactive evidence map.

Effects of the Coronavirus disease 2019 (COVID-19) pandemic on children stem beyond immediate infectious and post-infectious risks. Our aim was to conduct a scoping review and produce an online Interactive Evidence Map (IEM) highlighting available literature around unintended effects of the pandemic on children's and adolescents' mental, psychosocial, and physical health. A search was run monthly in MEDLINE, PsycINFO, CENTRAL, and Cochrane COVID-19 Study Register from May 1st 2021 through April 30th 2022. All articles involving children and adolescents under 18 years of age relating to any unintended mental, psychosocial, and physical health consequences of the pandemic and resultant restrictions were included. Data were extracted and topics categorized, with corresponding data uploaded into EPPI-Reviewer and transferred to EPPI-Mapper for visualization. A total of 14,555 citations were screened and 826 (6%) articles included. Most articles reported on mental health outcomes, particularly anxiety (n = 309, 37%) and depression (n = 294, 36%). Psychosocial outcomes related to lockdowns such as loneliness (n = 120, 15%) and impact on adolescent relationships with others (n = 149, 18%) were also reported. Fewer articles examined physical consequences, but those that did mostly focused on child abuse (n = 73, 9%). Overall, currently mapped literature focuses on consequences related to mental health outcomes such as anxiety and depression.

Understanding How Youth Search for Mental Health Information Online: A Qualitative Descriptive Study.

The objective of this study was to understand how youth search for mental health information online. Youth partners were engaged at the onset of the project and provided input throughout on the design, conduct and analysis. Individual, semi-structured interviews with Canadian youth with experience searching for mental health information online were conducted. Data collection and reflexive thematic analysis proceeded concurrently. Fourteen youth were interviewed. Four main themes related to how youth search online emerged: mind-set shapes the search process; external factors shape the search process; key attributes of helpful information; and cues affecting trustworthiness of online information. Findings can inform the development of youth-friendly online mental health information that is perceived as helpful and trustworthy by youth. Ensuring youth have access to quality online mental health information, accessible to how they search for it, is critical to the mental health and development of youth.

'It's quite a balancing act': A qualitative study of parents' experiences and information needs related to the COVID-19 pandemic.

INTRODUCTION: Throughout the coronavirus disease 2019 (COVID-19) pandemic, parents and children faced significant challenges as a result of prevention measures implemented to control the spread of the disease. Ensuring that families have access to essential health information is critical for improving health outcomes and adherence to public health recommendations. Understanding parents' experiences and information needs related to the pandemic and associated health measures (e.g., vaccination, mask wearing, social distancing, etc.) will inform the development and dissemination of resources tailored to parents' needs to support informed decision making. METHODS: We conducted a qualitative descriptive study. Between September and November 2021, parents across Canada were recruited online via social media and community organisation newsletters and listservs to participate in focus groups via Zoom. Focus groups were audio-recorded and transcribed verbatim. Data were coded and analysed using thematic analysis. Participants completed a demographic questionnaire before the focus groups (via SimpleSurveys). RESULTS: Sixty-seven parents participated in 12 focus groups between October and November 2021. In relation to experiences, parents felt they were (1) constantly trying to balance everything, and (2) trying to do their best with the information they had at the time when making decisions. Regarding information needs, parents reflected on (1) how difficult it was navigating copious amounts of changing information and finding credible sources to rely on, (2) the need for resources that were easily accessible, credible and in plain language and (3) the need for resources that were tailored to their needs to support them and their children make informed decisions. CONCLUSIONS: Trying to mitigate the risk of COVID-19 infection and adhere to public health recommendations, while balancing various factors (work, online learning, and social interactions) and navigating changing information, was overwhelming for many parents. Reflecting on their needs, parents suggested tailored resources that provided concise, credible information in plain language to help them make informed decisions and navigate conflicting information. These findings reveal important knowledge gaps and highlight areas that need to be addressed to support parents during the pandemic period and beyond. PATIENT OR PUBLIC CONTRIBUTION: Members of our established Paediatric Parent Advisory Group (P-PAG) were involved as collaborators throughout the planning (grant proposal), development and execution of the study. P-PAG members gave input on the design of the questionnaire, interview guide, recruitment strategy and interpretation of findings.

Four year evaluation of a parent advisory group to support a research program for knowledge translation in child health.

BACKGROUND: In 2016, we developed a pediatric parent advisory group to inform our research program which creates innovative knowledge translation (KT) tools for parents on priority topics related to acute childhood illness. We implemented a mixed methods strategy to evaluate the experiences of group members. The purpose of this paper is to present the findings from parent evaluations over four years and to discuss our experiences collaborating with the group over a multi-year period. METHODS: We conducted year-end surveys and interviews of group members to understand parents' perceptions of their experiences, group management, researcher interaction, and other outcomes of advisory group participation from 2018 to 2021. We applied a mixed methods approach, collecting and analyzing both quantitative (survey) and qualitative (survey/interview) data. Survey data were analyzed by term using descriptive statistics (i.e., frequencies, percentages). Open-ended survey responses were analyzed by conventional content analysis. Interview data were analysed thematically. RESULTS: Year-end survey response rates and interview participation varied over the years. Responses to evaluation questions were generally positive and most improved over time. Results prompted changes to improve P-PAG operations, such as changes to location of meetings, communications about the group's purpose, offering sufficient context for discussion items, and providing feedback about how members' input was used. Themes identified from the qualitative data related to the importance of certain aspects of group functioning, positive views of the group's current management, and potential areas for improvement. Parents regularly expressed a desire for more diversity in the group's membership and an interest in hearing more about how the research program's activities fit into the broader healthcare system and their impacts on health outcomes. CONCLUSIONS: Our experience in establishing, managing, and evaluating a parent advisory group over many years has resulted in valuable insights regarding patient engagement in health research and sustaining an advisory group over time. We have learned that an intentional and iterative approach with regular evaluations and responsive changes has been essential for fostering meaningful engagement. Significant resources are required to maintain the group; in turn, the group has made substantial and diverse contributions to the research program and its outputs.

We developed a parent advisory group in 2016 to support our research program in knowledge translation (KT, i.e., sharing research in accessible ways to inform decision-making) for child health. The purpose of the group is to involve parents in co-developing, evaluating, and sharing KT tools (e.g., videos, infographics). The group has also worked with researchers to inform methods and provide input on research projects and products. The group has been running for seven years and has involved different types of evaluations, including parent surveys and interviews. Parents had generally positive views of their experience with the group (including the group's management, interactions with researchers, etc.) and their responses mostly improved over the years. Based on parents' feedback, we made changes to improve the group's operations, such as changing the frequency and location of meetings, regular communications about the group's purpose, offering more context and time for individual discussion items, and providing feedback to parents about how their input was used. Parents regularly expressed a desire for more diversity in the group's membership. They also expressed an interest in hearing more about how the research program fit into the broader healthcare system and impacts on health outcomes. We have learned that it takes a large amount of time, effort, and funding to run the group; however, the parent contributions have been valuable and wide-reaching. We feel that the evaluations and responsive changes to the group over time have been essential to sustain and foster meaningful engagement and achieve the group's objectives.

A multimethods randomized trial found that plain language versions improved adults understanding of health recommendations.

OBJECTIVES: To make informed decisions, the general population should have access to accessible and understandable health recommendations. To compare understanding, accessibility, usability, satisfaction, intention to implement, and preference of adults provided with a digital "Plain Language Recommendation" (PLR) format vs. the original "Standard Language Version" (SLV). STUDY DESIGN AND SETTING: An allocation-concealed, blinded, controlled superiority trial and a qualitative study to understand participant preferences. An international on-line survey. 488 adults with some English proficiency. 67.8% of participants identified as female, 62.3% were from the Americas, 70.1% identified as white, 32.2% had a bachelor's degree as their highest completed education, and 42% said they were very comfortable reading health information. In collaboration with patient partners, advisors, and the Cochrane Consumer Network, we developed a plain language format of guideline recommendations (PLRs) to compare their effectiveness vs. the original standard language versions (SLVs) as published in the source guideline. We selected two recommendations about COVID-19 vaccine, similar in their content, to compare our versions, one from the World Health Organization (WHO) and one from Centers for Disease Control and Prevention (CDC). The primary outcome was understanding, measured as the proportion of correct responses to seven comprehension questions. Secondary outcomes were accessibility, usability, satisfaction, preference, and intended behavior, measured on a 1-7 scale. RESULTS: Participants randomized to the PLR group had a higher proportion of correct responses to the understanding questions for the WHO recommendation (mean difference [MD] of 19.8%, 95% confidence interval [CI] 14.7-24.9%; P < 0.001) but this difference was smaller and not statistically significant for the CDC recommendation (MD of 3.9%, 95% CI -0.7% to 8.3%; P = 0.096). However, regardless of the recommendation, participants found the PLRs more accessible, (MD of 1.2 on the seven-point scale, 95% CI 0.9-1.4%; P < 0.001) and more satisfying (MD of 1.2, 95% CI 0.9-1.4%; P < 0.001). They were also more likely to follow the recommendation if they had not already followed it (MD of 1.2, 95% CI 0.7-1.8%; P < 0.001) and share it with other people they know (MD of 1.9, 95% CI 0.5-1.2%; P < 0.001). There was no significant difference in the preference between the two formats (MD of -0.3, 95% CI -0.5% to 0.03%; P = 0.078). The qualitative interviews supported and contextualized these findings. CONCLUSION: Health information provided in a PLR format improved understanding, accessibility, usability, and satisfaction and thereby has the potential to shape public decision-making behavior.

We're here too: child health information-seeking experiences and preferences of Red River Métis families - a qualitative study.

BACKGROUND: Red River Métis families need access to meaningful and appropriate resources when their children are sick. At the invitation of the Manitoba Métis Federation (MMF) to partner in this research, our aim was to understand Red River Métis parents' experiences and preferences for seeking child health information when their child is acutely ill, to inform the adaptation of existing parent resources. METHODS: A qualitative descriptive approach underpinned by a participatory paradigm guided this study. Semi-structured interviews were conducted with 19 Red River Métis parents and Elders via Zoom or telephone. An inductive thematic analysis approach was used to explore patterns and themes across the data. RESULTS: Analysis generated four themes: (1) We're here too; (2) We are not all the same; (3) Finding trustworthy information; and (4) Information needs to be widely available. Red River Métis pride was prominent in the results. Parents provided tangible ways to modify existing parent resources, including adding information on how to access Elders, healers and/or traditional medicines and showing different family structures, transport, living situations, Métis names, and incorporating Métis languages. While most parents reported looking for child health information online, they also stressed the need to provide multiple options, including information sheets, recognizing that parents seek information in different contexts. Parents also emphasized the importance of accessible, safe spaces to find child health information, including local schools, community centres, healthcare organizations and the MMF. CONCLUSION: There is a lack of child health information created specifically for Red River Métis families. The development of this information can support their information needs and preferences and the ongoing efforts to revitalize Red River Métis culture and language. Study findings will inform the adaptation and dissemination of existing child health resources to ensure they reflect Red River Métis parents' information needs and preferences. This research is a critical step in addressing an identified need for Red River Métis families to have culturally relevant and meaningful child health resources, and in the pursuit of equitable care for all children in Canada. TRIAL REGISTRATION: N/A.

Patients' Use of a Standardized Medication List - A Mixed Methods Study.

Purpose: A medication list (ML) is a document listing the patient's entire medication, instructions for use, and indications. In Germany, a national standard was established in 2016 by law. However, data on patients' use of this standardized ML are scarce. We investigated (i) patients' practical use of the ML, (ii) patients' understanding of the ML, (iii) completeness and correctness of the current ML version, and (iv) reasons why patients did not adhere to their ML. Patients and Methods: Community pharmacists recruited patients possessing a standardized ML with ≥5 medications. Information sources to evaluate the ML were: (a) brown bag analysis, (b) practical demonstration, (c) patient interview, and (d) patient file. Data were analyzed using qualitative and quantitative methods. Results: Two hundred and eighty-eight patients (median age: 76 years, range: 27-95) were enrolled. (i) 38.5% of the patients used their ML regularly to prepare their medication and 73.3% to inform their physician. (ii) Overall, patients' understanding of the ML was good, with >80% of the patients being able to identify all relevant information. (iii) While n = 2779 medications were actually taken, n = 2539 were documented on the ML. No ML was fully correct and complete. Regarding particularly relevant items, ie, active ingredient, strength, dosage, medication missing or listed but not taken, 79.2% of ML were incorrect or incomplete. Handwritten modifications on the ML were frequent. (iv) Almost 60% of all patients did not follow their ML with "fear of adverse drug reactions" being the most frequently (n = 50) mentioned reason. Conclusion: Completeness and correctness of the current ML version was poor with handwritten modifications being frequent. Additionally, most of the patients did not adhere to their ML. This indicates that measures that lead to correct and up-to-date ML and improvements in patient counseling about their medication should be developed and implemented into routine practice.

Establishing priorities in child health: Giving parents and youth a voice.

Parents and youth across Alberta were engaged to identify specific research questions that are a priority to them. Two lists, containing 27 topics were developed with local parent and youth advisory groups, and sent to participants via online questionnaires. Topics were rated from one (least important) to five (most important) and ranked in order of priority. Initial questionnaires were completed by 263 (46%) parents and 308 (54%) youth. Parents rated five topics (behaviour, learning, and developmental disorders; mental health; food, environment and lifestyle; quality of health care; and vaccines) and youth rated four topics (brain and nerve health; mental health; quality of health care; and vaccines) as a high priority. Research questions stemming from 4 parent (12 [5%]) and 6 youth (21 [7%]) focus group discussions were then ranked in a second questionnaire, completed by 43 (43%) parents and 56 (56%) youth. Parents' highest ranked research question was 'What is the effect of screen time on cognition and neurodevelopment for children and adolescents?', while the highest ranked question from youth was 'What are the early signs of anxiety and depression and when should an individual seek help?'. These topics highlight areas that are important to parents and youth where funding, research, and knowledge mobilization efforts should be directed.

The impact of heating, ventilation, and air conditioning design features on the transmission of viruses, including the 2019 novel coronavirus: A systematic review of filtration.

Historically, viruses have demonstrated airborne transmission. Emerging evidence suggests the novel coronavirus (SARS-CoV-2) that causes COVID-19 also spreads by airborne transmission. This is more likely in indoor environments, particularly with poor ventilation. In the context of airborne transmission, a vital mitigation strategy for the built environment is heating, ventilation, and air conditioning (HVAC) systems. HVAC features could modify virus transmission potential. A systematic review was conducted to identify and synthesize research examining the effectiveness of filters within HVAC systems in reducing virus transmission. A comprehensive search of OVID MEDLINE, Compendex, and Web of Science Core was conducted to January 2021. Two authors were involved in study selection, data extraction, and risk of bias assessments. Study characteristics and results were displayed in evidence tables and findings were synthesized narratively. Twenty-three relevant studies showed that: filtration was associated with decreased transmission; filters removed viruses from the air; increasing filter efficiency (efficiency of particle removal) was associated with decreased transmission, decreased infection risk, and increased viral filtration efficiency (efficiency of virus removal); increasing filter efficiency above MERV 13 was associated with limited benefit in further reduction of virus concentration and infection risk; and filters with the same efficiency rating from different companies showed variable performance. Adapting HVAC systems to mitigate virus transmission requires a multi-factorial approach and filtration is one factor offering demonstrated potential for decreased transmission. For filtration to be effective, proper installation is required. Of note, similarly rated filters from different companies may offer different virus reduction results. While increasing filtration efficiency (i.e., increasing MERV rating or moving from MERV to HEPA) is associated with virus mitigation, there are diminishing returns for filters rated MERV 13 or higher. Although costs increase with filtration efficiency, they are lower than the cost of ventilation options with the equivalent reduction in transmission. Systematic review registration: PROSPERO 2020 CRD42020193968.

Plain Language vs Standard Format for Youth Understanding of COVID-19 Recommendations: A Randomized Clinical Trial.

Importance: To ensure that youths can make informed decisions about their health, it is important that health recommendations be presented for understanding by youths. Objective: To compare understanding, accessibility, usability, satisfaction, intention to implement, and preference of youths provided with a digital plain language recommendation (PLR) format vs the original standard language version (SLV) of a health recommendation. Design, Setting, and Participants: This pragmatic, allocation-concealed, blinded, superiority randomized clinical trial included individuals from any country who were 15 to 24 years of age, had internet access, and could read and understand English. The trial was conducted from May 27 to July 6, 2022, and included a qualitative component. Interventions: An online platform was used to randomize youths in a 1:1 ratio to an optimized digital PLR or SLV format of 1 of 2 health recommendations related to the COVID-19 vaccine; youth-friendly PLRs were developed in collaboration with youth partners and advisors. Main Outcomes and Measures: The primary outcome was understanding, measured as the proportion of correct responses to 7 comprehension questions. Secondary outcomes were accessibility, usability, satisfaction, preference, and intended behavior. After completion of the survey, participants indicated their interest in completing a 1-on-1 semistructured interview to reflect on their preferred digital format (PLR or SLV) and their outcome assessment survey response. Results: Of the 268 participants included in the final analysis, 137 were in the PLR group (48.4% female) and 131 were in the SLV group (53.4% female). Most participants (233 [86.9%]) were from North and South America. No significant difference was found in understanding scores between the PLR and SLV groups (mean difference, 5.2%; 95% CI, -1.2% to 11.6%; P = .11). Participants found the PLR to be more accessible and usable (mean difference, 0.34; 95% CI, 0.05-0.63) and satisfying (mean difference, 0.39; 95% CI, 0.06-0.73) and had a stronger preference toward the PLR (mean difference, 4.8; 95% CI, 4.5-5.1 [4.0 indicated a neutral response]) compared with the SLV. No significant difference was found in intended behavior (mean difference, 0.22 (95% CI, -0.20 to 0.74). Interviewees (n = 14) agreed that the PLR was easier to understand and generated constructive feedback to further improve the digital PLR. Conclusions and Relevance: In this randomized clinical trial, compared with the SLV, the PLR did not produce statistically significant findings in terms of understanding scores. Youths ranked it higher in terms of accessibility, usability, and satisfaction, suggesting that the PLR may be preferred for communicating health recommendations to youths. The interviews provided suggestions for further improving PLR formats. Trial Registration: ClinicalTrials.gov Identifier: NCT05358990.

Equity issues rarely addressed in the development of COVID-19 formal recommendations and good practice statements: a cross-sectional study.

BACKGROUND AND OBJECTIVE: To identify COVID-19 actionable statements (e.g., recommendations) focused on specific disadvantaged populations in the living map of COVID-19 recommendations (eCOVIDRecMap) and describe how health equity was assessed in the development of the formal recommendations. METHODS: We employed the place of residence, race or ethnicity or culture, occupation, gender or sex, religion, education, socio-economic status, and social capital-Plus framework to identify statements focused on specific disadvantaged populations. We assessed health equity considerations in the evidence to decision frameworks (EtD) of formal recommendations for certainty of evidence and impact on health equity criteria according to the Grading of Recommendations, Assessment, Development, and Evaluations criteria. RESULTS: We identified 16% (124/758) formal recommendations and 24% (186/819) good practice statements (GPS) that were focused on specific disadvantaged populations. Formal recommendations (40%, 50/124) and GPS (25%, 47/186) most frequently focused on children. Seventy-six percent (94/124) of the recommendations were accompanied with EtDs. Over half (55%, 52/94) of those considered indirectness of the evidence for disadvantaged populations. Considerations in impact on health equity criterion most frequently involved implementation of the recommendation for disadvantaged populations (17%, 16/94). CONCLUSION: Equity issues were rarely explicitly considered in the development COVID-19 formal recommendations focused on specific disadvantaged populations. Guidance is needed to support the consideration of health equity in guideline development during health emergencies.