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BACKGROUND: The COVID-19 pandemic altered traffic patterns worldwide, potentially impacting pedestrian and bicyclists safety in urban areas. In Toronto, Canada, work from home policies, bicycle network expansion, and quiet streets were implemented to support walking and cycling. We examined pedestrian and bicyclist injury trends from 2012 to 2022, utilizing police-reported killed or severely injured (KSI), emergency department (ED) visits and hospitalization data. METHODS: We used an interrupted time series design, with injury counts aggregated quarterly. We fit a negative binomial regression using a Bayesian modeling approach to data prior to the pandemic that included a secular time trend, quarterly seasonal indicator variables, and autoregressive terms. The differences between observed and expected injury counts based on pre-pandemic trends with 95% credible intervals (CIs) were computed. RESULTS: There were 38% fewer pedestrian KSI (95%CI: 19%, 52%), 35% fewer ED visits (95%CI: 28%, 42%), and 19% fewer hospitalizations (95%CI: 2%, 32%) since the beginning of the COVID-19 pandemic. A reduction of 35% (95%CI: 7%, 54%) in KSI bicyclist injuries was observed, but However, ED visits and hospitalizations from bicycle-motor vehicle collisions were compatible with pre-pandemic trends. In contrast, for bicycle injuries not involving motor vehicles, large increases were observed for both ED visits, 73% (95% CI: 49%, 103%) and for hospitalization 108% (95% CI: 38%, 208%). CONCLUSION: New road safety interventions during the pandemic may have improved road safety for vulnerable road users with respect to collisions with motor vehicles; however, further investigation into the risk factors for bicycle injuries not involving motor vehicles is required.
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Accidentes de Tránsito , Ciclismo , COVID-19 , Servicio de Urgencia en Hospital , Análisis de Series de Tiempo Interrumpido , Heridas y Lesiones , Humanos , COVID-19/epidemiología , Accidentes de Tránsito/estadística & datos numéricos , Ciclismo/lesiones , Ciclismo/estadística & datos numéricos , Heridas y Lesiones/epidemiología , Adulto , Masculino , Femenino , Ontario/epidemiología , Persona de Mediana Edad , Servicio de Urgencia en Hospital/estadística & datos numéricos , SARS-CoV-2 , Peatones/estadística & datos numéricos , Adolescente , Anciano , Pandemias , Adulto Joven , Niño , Caminata/lesiones , Caminata/estadística & datos numéricos , Hospitalización/estadística & datos numéricos , Preescolar , Teorema de Bayes , LactanteRESUMEN
INTRODUCTION: Incorporating shared decision-making (SDM) with children and families in hospitals was a top priority identified by patients, caregivers, and clinicians. Bronchiolitis, a common and costly reason for hospitalization in children, is an exemplar condition to study SDM in hospitals. Internationally, clinical practice guidelines differ when recommending intravenous (IV or parenteral) or nasogastric (NG or enteral) fluids for hospitalized infants with bronchiolitis who are unsafe to be fed orally. While evidence indicates that either IV or NG fluids are safe and effective, parent involvement in SDM in selecting IV or NG fluids is unknown. Our aim is to generate knowledge of SDM with parents in choosing between IV or NG fluids and the benefits and harms of these two treatment options for hospitalized children with bronchiolitis. METHOD: This is a multicenter, prospective, observational study, including children aged <12 months admitted to hospital with bronchiolitis requiring supplemental IV or NG fluids. The primary outcome will evaluate the extent of SDM in choosing IV versus NG fluids using the validated CollaboRATE tool. Secondary outcomes include the proportion of parents provided a choice of IV versus NG fluids; parent knowledge of fluid therapy; rate of fluids; length of hospital stay; and complications. DISCUSSION: This study will evaluate the extent of SDM in hospitalized infants with bronchiolitis who require IV or NG fluids and will evaluate both patient-centered and clinical outcomes that are relevant to clinical practice.
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BACKGROUND: The COVID-19 pandemic policy response dramatically changed local transportation patterns. This project investigated the impact of COVID-19 policies on motor vehicle collision (MVC)-related emergency department (ED) visits and hospitalisations in Ontario. METHODS: Data were collected on MVC-related ED visits and hospitalisations in Ontario between March 2016 and December 2022. Using an interrupted time series design, negative binomial regression models were fitted to the pre-pandemic data, including monthly indicator variables for seasonality and accounting for autocorrelation. Extrapolations simulated expected outcome trajectories during the pandemic, which were compared with actual observed outcome counts using the overall per cent change and mean monthly difference. Data were modelled separately for vehicle occupants, pedestrians and cyclists (MVC and non-MVC injuries). RESULTS: There was a 31.5% decrease in observed ED visits (95% CI -35.4 to -27.3) and a 6.0% decrease in hospitalisations (95% CI -13.2 to 1.6) among vehicle occupants, relative to expected counts during the pandemic. Results were similar for pedestrians. Among cyclist MVCs, there was an increase in ED visits (12.8%, 95% CI -8.2 to 39.4) and hospitalisations (46.0%, 95% CI 11.6 to 93.6). Among non-MVC cyclists, there was also an increase in ED visits (47.0%, 95% CI 12.5 to 86.8) and hospitalisations (50.1%, 95% CI 8.2 to 101.2). CONCLUSIONS: We observed fewer vehicle occupant and pedestrian collision injuries than expected during the pandemic. By contrast, we observed more cycling injuries than expected, especially in cycling injuries not involving motor vehicles. These observations may be attributable to changes in transportation patterns during the pandemic and increased uptake of recreational cycling.
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Importance: Bronchiolitis is the most common and most cumulatively expensive condition in pediatric hospital care. Few population-based studies have examined health inequalities in bronchiolitis outcomes over time. Objective: To examine trends in bronchiolitis-related emergency department (ED) visit and hospitalization rates by sociodemographic factors in a universally funded health care system. Design, Setting, and Participants: This repeated cross-sectional cohort study was performed from April 1, 2004, to March 31, 2022, using population-based health administrative data from children younger than 2 years in Ontario, Canada. Main Outcome and Measures: Bronchiolitis ED visit and hospitalization rates per 1000 person-years reported for the equity stratifiers of sex, residence location (rural vs urban), and material resources quintile. Trends in annual rates by equity stratifiers were analyzed using joinpoint regression and estimating the average annual percentage change (AAPC) with 95% CI and the absolute difference in AAPC with 95% CI from April 1, 2004, to March 31, 2020. Results: Of 2â¯921â¯573 children included in the study, 1â¯422â¯088 (48.7%) were female and 2â¯619â¯139 (89.6%) lived in an urban location. Emergency department visit and hospitalization rates were highest for boys, those with rural residence, and those with least material resources. There were no significant between-group absolute differences in the AAPC in ED visits per 1000 person-years by sex (female vs male; 0.22; 95% CI, -0.92 to 1.35; P = .71), residence (rural vs urban; -0.31; 95% CI -1.70 to 1.09; P = .67), or material resources (quintile 5 vs 1; -1.17; 95% CI, -2.57 to 0.22; P = .10). Similarly, there were no significant between-group absolute differences in the AAPC in hospitalizations per 1000 person-years by sex (female vs male; 0.53; 95% CI, -1.11 to 2.17; P = .53), residence (rural vs urban; -0.62; 95% CI, -2.63 to 1.40; P = .55), or material resources (quintile 5 vs 1; -0.93; 95% CI -3.80 to 1.93; P = .52). Conclusions and Relevance: In this population-based cohort study of children in a universally funded health care system, inequalities in bronchiolitis ED visit and hospitalization rates did not improve over time.
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Bronquiolitis , Servicio de Urgencia en Hospital , Hospitalización , Humanos , Servicio de Urgencia en Hospital/estadística & datos numéricos , Servicio de Urgencia en Hospital/tendencias , Masculino , Femenino , Hospitalización/estadística & datos numéricos , Hospitalización/tendencias , Lactante , Bronquiolitis/epidemiología , Bronquiolitis/terapia , Ontario/epidemiología , Estudios Transversales , Factores Sociodemográficos , Población Rural/estadística & datos numéricos , Población Rural/tendencias , Recién Nacido , Estudios de Cohortes , Población Urbana/estadística & datos numéricos , Población Urbana/tendencias , Preescolar , Visitas a la Sala de EmergenciasRESUMEN
OBJECTIVE: To examine the associations between several potential predictors (child biologic, social, and family factors) and a positive screen for developmental delay using the Infant Toddler Checklist (ITC) at the 18-month health supervision visit in primary care. METHODS: This was a cross-sectional study of healthy children attending an 18-month health supervision visit in primary care. Parents completed a standardized questionnaire, addressing child, social, and family characteristics, and the ITC. Logistic regression analyses were used to assess the associations between predictors and a positive ITC. RESULTS: Among 2188 participants (45.5% female; mean age, 18.2 months), 285 (13%) had a positive ITC and 1903 (87%) had a negative ITC. The aOR for a positive ITC for male compared with female sex was 2.15 (95% CI, 1.63-2.83; P < .001). The aOR for birthweight was 0.65 per 1 kg increase (95% CI, 0.53-0.80; P < .001). The aOR for a family income of <$40,000 compared with ≥$150,000 was 3.50 (95% CI, 2.22-5.53; P < .001), and the aOR for family income between $40,000-$79,999 compared with ≥$150,000 was 1.88 (95% CI, 1.26-2.80; P = .002). CONCLUSIONS: Screening positive on the ITC may identify children at risk for the double jeopardy of developmental delay and social disadvantage and allow clinicians to intervene through monitoring, referral, and resource navigation for both child development and social needs. TRIAL REGISTRATION: Clinicaltrials.gov (NCT01869530).
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Lista de Verificación , Renta , Lactante , Humanos , Masculino , Femenino , Preescolar , Estudios Transversales , Desarrollo Infantil , PadresRESUMEN
OBJECTIVES: Children and families are increasingly involved as equal partners in child health research, however, considerations around authorship have received little attention and there is limited guidance on the topic. Our objective was to determine the frequency and nature of patient partner authorship and/or acknowledgment among articles focused on patient engagement in child health research. STUDY DESIGN AND SETTING: In this umbrella review, we searched MEDLINE, Embase, APA PsycINFO, Cochrane Database of Systematic Reviews, CINAHL, and Web of Science for systematic/scoping reviews on patient engagement in child health research. Individual articles included in eligible reviews comprised the sample of articles for analysis and were examined to identify patient partner authorship. Descriptive statistics were used to quantify patient partner authorship and/or acknowledgment and to summarize article characteristics. RESULTS: Twelve systematic/scoping reviews met eligibility criteria, from which 230 individual articles were examined. In 16/230 (7%) articles, there was at least one patient partner author, and in 6/230 (3%) articles, patient partners were included as group authors. Within article Acknowledgments sections, patient partners were acknowledged by name in 41/230 (18%) articles, and anonymously or as a group in 98/230 (43%) articles. Patient partner authorship and/or acknowledgment was more frequent among articles published more recently (after 2015) and among articles where patient engagement was explicitly reported in the article. CONCLUSION: Patient partners were more likely to be acknowledged than listed as an author on articles on patient engagement in child health research. Understanding patient partner preferences about authorship and acknowledgment, examination of the unique aspects of child and youth authorship and developing supports to empower patient partner authorship are needed.
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Autoria , Salud Infantil , Niño , Humanos , Adolescente , Prevalencia , Revisiones Sistemáticas como AsuntoRESUMEN
BACKGROUND: There are few data on patient and public involvement (PPI) in pragmatic trials. We aimed to describe the prevalence and nature of PPI within pragmatic trials, describe variation in prevalence of PPI by trial characteristics and compare prevalence of PPI reported by trial authors to that reported in trial publications. METHODS: We applied a search filter to identify pragmatic trials published from 2014 to 2019 in MEDLINE. We invited the corresponding authors of pragmatic trials to participate in an online survey about their specific trial. RESULTS: Of 3163 authors invited, 2585 invitations were delivered, 710 (27.5%) reported on 710 unique trials and completed the survey; 334 (47.0%) conducted PPI. Among those who conducted PPI, for many the aim was to increase the research relevance (86.3%) or quality (76.5%). Most PPI partners were engaged at protocol development stages (79.1%) and contributed to the co-design of interventions (70.9%) or recruitment or retention strategies (60.5%). Patient and public involvement was more common among trials involving children, trials conducted in the United Kingdom, cluster randomized trials, those explicitly labelled as "pragmatic" in the study manuscript, and more recent trials. Less than one-quarter of trials (22.8%) that reported PPI in the survey also reported PPI in the trial manuscript. INTERPRETATION: Nearly half of trialists in this survey reported conducting PPI and listed several benefits of doing so, but researchers who did not conduct PPI often cited a lack of requirement for it. Patient and public involvement appears to be significantly underreported in trial publications. Consistent and standardized reporting is needed to promote transparency about PPI methods, outcomes, challenges and benefits.
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There is little evidence on the prevalence of the double burden and association between body mass index (BMI) and iron deficiency among young children living in high-income countries. We conducted a cross-sectional study of healthy children, 12-29 months of age, recruited during health supervision visits in Toronto, Canada, and concurrently measured BMI and serum ferritin. The prevalence of a double burden of underweight (zBMI < -2) and iron deficiency or overweight/obesity (zBMI > 2) and iron deficiency was calculated. Regression models examined BMI and serum ferritin as continuous and categorical variables, adjusted for covariates. We found the following in terms of prevalence among 1953 children (mean age 18.3 months): underweight 2.6%, overweight/obesity 4.9%, iron deficiency 13.8%, iron-deficiency anemia 5.4%, underweight and iron deficiency 0.4%, overweight/obesity and iron deficiency 1.0%. The change in median serum ferritin for each unit of zBMI was -1.31 µg/L (95% CI -1.93, -0.68, p < 0.001). Compared with normal weight, we found no association between underweight and iron deficiency; meanwhile, overweight/obesity was associated with a higher odds of iron deficiency (OR 2.15, 95% CI 1.22, 3.78, p = 0.008). A double burden of overweight/obesity and iron deficiency occurs in about 1.0% of young children in this high-income setting. For risk stratification and targeted screening in young children, overweight/obesity should be added to the list of important risk factors.
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Deficiencias de Hierro , Sobrepeso , Niño , Humanos , Preescolar , Lactante , Sobrepeso/epidemiología , Estudios Transversales , Delgadez/epidemiología , Canadá/epidemiología , Obesidad , Atención Primaria de Salud , FerritinasRESUMEN
Importance: Identifying research priorities of patients with concussion, their caregivers, and their clinicians is important to ensure future concussion research reflects the needs of those who will benefit from the research. Objective: To prioritize concussion research questions from the perspectives of patients, caregivers, and clinicians. Design, Setting, and Participants: This cross-sectional survey study used the standardized James Lind Alliance priority-setting partnership methods (2 online cross-sectional surveys and 1 virtual consensus workshop using modified Delphi and nominal group techniques). Data were collected between October 1, 2020, and May 26, 2022, from people with lived concussion experience (patients and caregivers) and clinicians who treat concussion throughout Canada. Exposures: The first survey collected unanswered questions about concussion that were compiled into summary questions and checked against research evidence to ensure they were unanswered. A second priority-setting survey generated a short list of questions, and 24 participants attended a final priority-setting workshop to decide on the top 10 research questions. Main Outcomes and Measures: Top 10 concussion research questions. Results: The first survey had 249 respondents (159 [64%] who identified as female; mean [SD] age, 45.1 [16.3] years), including 145 with lived experience and 104 clinicians. A total of 1761 concussion research questions and comments were collected and 1515 (86%) were considered in scope. These were combined into 88 summary questions, of which 5 were considered answered following evidence review, 14 were further combined to form new summary questions, and 10 were removed for being submitted by only 1 or 2 respondents. The 59 unanswered questions were circulated in a second survey, which had 989 respondents (764 [77%] who identified as female; mean [SD] age, 43.0 [4.2] years), including 654 people who identified as having lived experience and 327 who identified as clinicians (excluding 8 who did not record type of participant). This resulted in 17 questions short-listed for the final workshop. The top 10 concussion research questions were decided by consensus at the workshop. The main research question themes focused on early and accurate concussion diagnosis, effective symptom management, and prediction of poor outcomes. Conclusions and Relevance: This priority-setting partnership identified the top 10 patient-oriented research questions in concussion. These questions can be used to provide direction to the concussion research community and help prioritize funding for research that matters most to patients living with concussion and those who care for them.
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Investigación Biomédica , Cuidadores , Adulto , Femenino , Humanos , Persona de Mediana Edad , Estudios Transversales , Prioridades en Salud , Encuestas y Cuestionarios , MasculinoRESUMEN
BACKGROUND: In Canada, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research (SPOR) in 2011. The strategy defines 'patient-oriented research' as a continuum of research that engages patients as partners, focuses on patient priorities, and leads to improved patient outcomes. The overarching term 'patient' is inclusive of individuals with personal experience of a health issue as well as informal caregivers including family and friends. The vision for the strategy is improved patient experiences and outcomes through the integration of patient-oriented research findings into practice, policy, and health system improvement. Building capacity in patient-oriented research among all relevant stakeholders, namely patients, practitioners, organizational leaders, policymakers, researchers, and research funders is a core element of the strategy. MAIN BODY: The objective of this paper is to describe capacity building initiatives in patient-oriented research led by the Ontario SPOR SUPPORT Unit in Ontario, Canada over the period 2014-2020. CONCLUSION: The Ontario SPOR SUPPORT Unit Working Group in Training and Capacity Development has led numerous capacity building initiatives: developed a Capacity Building Compendium (accessed greater than 45,000 times); hosted Masterclasses that have trained hundreds of stakeholders (patients, practitioners, organizational leaders, policymakers, researchers, and trainees) in the conduct and use of patient-oriented research; funded the development of online curricula on patient-oriented research that have reached thousands of stakeholders; developed a patient engagement resource center that has been accessed by tens of thousands of stakeholders; identified core competencies for research teams and research environments to ensure authentic and meaningful patient partnerships in health research; and shared these resources and learnings with stakeholders across Canada, North America, and internationally.
In 2011, Canada developed a Strategy for Patient-Oriented Research. The aim of the strategy was to ensure that patients were included as equal partners in research, with the goal to improve the patient experience and enhance health outcomes using research findings to influence clinical care, policy, and health system improvement. Building capacity in patient-oriented research is a core element of the strategy. Since 2014, the Ontario SPOR SUPPORT Unit has led numerous initiatives to build capacity in patient-oriented research. Successes include a Capacity Building Compendium (a catalogue of resources that has been accessed greater than 45,000 times); courses on how to do and how to use patient-oriented research that have trained hundreds of patients, practitioners, organizational leaders, policymakers, and researchers; created online patient-oriented research materials; developed a patient engagement resource center; identified what is required to ensure authentic and meaningful patient partnerships in research; and shared these resources and learnings widely.
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BACKGROUND: Concussion public policies have been developed to address the burden of concussions. The aim of the present study was to examine implementation compliance, barriers, and facilitators of Canada's first concussion public policy, Ontario's Policy/Program Memorandum 158: School Board Policies on Concussion (PPM158). METHODS: An electronic survey was sent to 515 randomly selected elementary and high school principals across specific geographic, language, and publicly funded school types in Ontario. Data were analyzed using both qualitative and quantitative methods. RESULTS: One hundred and thirty-five principals responded to the survey (26%). Concussion education was provided to teachers in 81% of schools, to students in 83%, and coaches in 79%. Additionally, 89% reported having a return-to-learn protocol in place and 90% reported having a return-to-play protocol. Implementation barriers included difficulties in providing concussion education to parents (42%), obtaining notes from physicians, and maintaining the volume of documentation. Eighty-seven percent of respondents believed that PPM158 improves student well-being. CONCLUSIONS: Identified implementation barriers and facilitators can inform concussion policy practices to improve student well-being. We recommend: (1) an appointed concussion policy lead at each school, (2) electronic documentation, (3) determining the optimal education format to improve parent/guardian education, (4) fostering relationships between schools and health care professionals, and (5) student concussion education in every grade in Ontario schools.
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Política Pública , Instituciones Académicas , Humanos , Estudios Transversales , OntarioRESUMEN
OBJECTIVE: To identify impacts of patient and family engagement in child health research on the research process, research teams, and patient and family partners. STUDY DESIGN: A scoping review was conducted using the MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, and Web of Science databases. English-language studies were included if they described ≥1 impact of patient and family engagement on child health research (age <18 years), researchers, or patient and family partners. Data were retrieved by 2 independent extractors. RESULTS: Of the 7688 studies identified, 25 were included in our analysis. Impacts of patient and family engagement were mostly on the research process (n = 24 studies; 96%), 11 (44%) determined impacts on the research team, and 17 (68%) reported impacts on patient and family partners. Less than one-half (n = 11; 44%) had a primary purpose of determining the impact of patient engagement, and no study used a specific evaluation tool. CONCLUSIONS: Patient and family engagement can strengthen the relevance and feasibility of research and empower researchers and patient partners. Measuring and reporting the impact of engagement is rare. Systematic and standardized evaluation of engagement is needed to understand how, when, and why to engage patients and families.
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Salud Infantil , Participación del Paciente , Niño , Humanos , Adolescente , LenguajeRESUMEN
BACKGROUND AND OBJECTIVES: A landmark longitudinal study, conducted in Costa Rica in the 1980s, found that children with chronic iron deficiency compared with good iron status in infancy had 8 to 9 points lower cognitive scores, up to 19 years of age. Our objective was to examine this association in a contemporary, high-resource setting. METHODS: This was a prospective observational study of children aged 12 to 40 months screened with hemoglobin and serum ferritin. All parents received diet advice; children received oral iron according to iron status. After 4 months, children were grouped as: chronic iron deficiency (iron deficiency anemia at baseline or persistent nonanemic iron deficiency) or iron sufficiency (IS) (IS at baseline or resolved nonanemic iron deficiency). Outcomes measured at 4 and 12 months included the Early Learning Composite (from the Mullen Scales of Early Learning) and serum ferritin. RESULTS: Of 1478 children screened, 116 were included (41 chronic, 75 sufficient). Using multivariable analyses, the mean between-group differences in the Early Learning Composite at 4 months was -6.4 points (95% confidence interval [CI]: -12.4 to -0.3, P = .04) and at 12 months was -7.4 points (95% CI: -14.0 to -0.8, P = .03). The mean between-group differences in serum ferritin at 4 months was 14.3 µg/L (95% CI: 1.3-27.4, P = .03) and was not significantly different at 12 months. CONCLUSIONS: Children with chronic iron deficiency, compared with children with IS, demonstrated improved iron status, but cognitive scores 6 to 7 points lower 4 and 12 months after intervention. Future research may examine outcomes of a screening strategy on the basis of early detection of iron deficiency using serum ferritin.
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Anemia Ferropénica , Deficiencias de Hierro , Preescolar , Humanos , Anemia Ferropénica/diagnóstico , Cognición , Ferritinas , Hierro , Lactante , Estudios ProspectivosRESUMEN
BACKGROUND: Patient and family engagement is thought to improve the quality and relevance of child health research. We developed and evaluated the usability of Patient Engagement 101, an e-learning module designed to strengthen the patient-oriented research readiness of health care professionals, researchers, trainees and other stakeholders. METHODS: The development of Patient Engagement 101 was co-led by a parent and a researcher and overseen by a diverse multistake-holder steering committee. The module was refined and evaluated using a mixed-methods usability testing approach with 2 iterative cycles of semistructured interviews, observations and questionnaires. We collected module feedback by way of semistructured interviews, the validated System Usability Scale, and satisfaction, knowledge and confidence questionnaires. Thematic coding of transcripts and field notes, informed by team discussions, guided the module revisions. RESULTS: Thirty end-users completed usability testing (15 per cycle). In each cycle, we modified the module with respect to its content, learner experience, learner-centred design and aesthetic design. Participants were highly satisfied, and System Usability Scale scores indicated the module had the best imaginable usability. Substantial increases in the participants' knowledge test scores and the confidence to engage in patient-oriented research, but not self-rated knowledge, were observed after module completion. INTERPRETATION: Codevelopment with patients and caregivers, and refinement through comprehensive end-user testing, resulted in a training resource with exceptional usability that improved knowledge and confidence to engage in patient-oriented research in child health. Patient Engagement 101 is openly available online, and the methods used to develop and evaluate it may facilitate the creation and evaluation of similar capacity-building resources.
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Instrucción por Computador , Diseño Centrado en el Usuario , Niño , Salud Infantil , Curriculum , Personal de Salud , Humanos , Participación del Paciente , Interfaz Usuario-ComputadorAsunto(s)
Planificación Anticipada de Atención , Anciano , Documentación , Hospitales , Humanos , Instituciones ResidencialesRESUMEN
Background: Engaging patients and families as research partners increases the relevance, quality, and impact of child health research. However, those interested in research engagement may feel underequipped to meaningfully partner. We sought to co-develop an online learning (e-learning) module, "Research 101," to support capacity-development in patient-oriented child health research amongst patients and families. Methods: Module co-development was co-led by a parent and researcher, with guidance from a diverse, multi-stakeholder steering committee. A mixed-methods usability testing approach, with three iterative cycles of semi-structured interviews, observations, and questionnaires, was used to refine and evaluate the e-learning module. Module feedback was collected during testing and a post-module interview, and with the validated System Usability Scale (SUS), and satisfaction, knowledge, and self-efficacy questionnaires. Transcripts and field notes were analyzed through team discussion and thematic coding to inform module revisions. Results: Thirty participants fully tested Research 101, and another 15 completed confirmatory usability testing (32 caregivers, 6 patients, and 7 clinician-researchers). Module modifications pertaining to learner-centered design, content, aesthetic design, and learner experience were made in each cycle. SUS scores indicated the overall usability of the final version was "excellent." Participants' knowledge of patient-oriented research and self-efficacy to engage in research improved significantly after completing Research 101 (p < 0.01). Conclusions: Co-development and usability testing facilitated the creation of an engaging and effective resource to support the scaling up of patient-oriented child health research capacity. The methods and findings of this study may help guide the integration of co-development and usability testing in creating similar resources.
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OBJECTIVES: Concussions are a major public health concern, and, thus, specific policies have been developed for implementation targeting vulnerable populations such as school-aged children and youth in the school setting, in whom the majority of concussions are sports related. Currently, concussion policies exist in various jurisdictions, including Canada's first concussion policy for schools, Ontario's PPM158, initiated in 2014. However, these policies are often variable in terms of content and comprehensiveness. Our objective was to develop a consensus for the content of concussion policy for schools. METHODS: Following a pilot study in one Ontario school board in 2015, which identified missing elements in existing concussion policy, we employed a modified Delphi method to develop consensus for the content of concussion public policy for schools. We used an integrated knowledge translation approach with participation from a multidisciplinary stakeholder group of 20 experts including principals, school board directors, physicians, policymakers, public health representatives and parents. RESULTS: Based on the experts, we created a list of 30 policy recommendations for concussion policy in the school setting. This comprehensive list reflects the diverse perspectives of the experts and addresses the role of parents, teachers, coaches, school administrators, referees, trainers, physicians/nurse practitioners, public health and students. CONCLUSIONS: This is the first expert consensus for content of concussion public policy for schools and can be used for policy development or enhancement in schools in other jurisdictions. We provide a comprehensive list of 30 recommendations to guide best practices for policy development and implementation to enhance school-based concussion prevention and management.
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Traumatismos en Atletas , Conmoción Encefálica , Adolescente , Traumatismos en Atletas/prevención & control , Conmoción Encefálica/prevención & control , Niño , Consenso , Humanos , Proyectos Piloto , Política PúblicaRESUMEN
Importance: The research agenda in pediatric hospital medicine has seldom considered the perspectives of young people, parents and caregivers, and health care professionals. Their perspectives may be useful in identifying questions on topics for research. Objective: To prioritize unanswered research questions in pediatric hospital medicine from the perspectives of young people, parents/caregivers, and health care professionals. Design, Setting, and Participants: Between August 4, 2020, and August 19, 2021, two online surveys and a virtual workshop were conducted, using modified Delphi technique and nominal group technique. Young people, parents/caregivers, and health care professionals with experiences in pediatric hospital medicine in Canada were included. Interventions: The established James Lind Alliance Priority Setting Partnership method was used. In phase 1, a survey collected unanswered questions regarding pediatric hospital medicine via 3 open-ended questions. Survey responses were used to develop summary questions that went through an evidence-checking process. Unanswered questions were brought to a phase 2 interim prioritization survey. The top 10 unanswered research questions in pediatric hospital medicine were established at the final priority setting workshop. Main Outcomes and Measures: Survey responses, top 10 research questions. Results: The phase 1 survey was completed by 188 participants (148 of 167 [89%] females; 17 of 167 [10%] males; mean [SD] age, 39.5 [12.4] years) and generated 495 unanswered research questions and comments, of which 58 were deemed out of scope. The remaining 437 responses were grouped into themes (eg, communication, shared decision-making, health service delivery, and health service management) and then refined to 75 unanswered research questions. Of these 75, only 4 questions had sufficient evidence. To make the number of questions in phase 2 manageable, 21 questions submitted by only 1 respondent were eliminated. Fifty unanswered research questions were included in the phase 2 survey, which was completed by 201 participants (165 of 186 [89%] females; 19 of 186 [10%] males; mean [SD] age, 40.0 [11.0] years). A short list of 16 questions-the top 10 questions from patient partners (youths, parents/caregivers) and clinicians-was presented at the final priority setting workshop and the top 10 questions were prioritized. The top 10 questions focused on the care of special inpatient populations (eg, children with medical complexity), communication, shared decision-making, support strategies in the hospital, mental health supports, shortening length of stay, and supporting Indigenous patients, parents/caregivers, and families. Conclusions and Relevance: This patient-oriented pediatric hospital medicine priority setting partnership identified the most important unanswered research questions focused on the care of children in the hospital. These questions provide a possible roadmap for research on areas deemed important to young people, parents/caregivers, and clinicians.
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Cuidadores , Medicina , Adolescente , Adulto , Niño , Femenino , Hospitales Pediátricos , Humanos , Masculino , Proyectos de Investigación , Encuestas y CuestionariosRESUMEN
Norman Saunders was a respected academic community paediatrician who was passionate about the care of children with medical complexity. Following his untimely death at age 60, patients, friends, and colleagues raised funds to create the Norman Saunders Complex Care Initiative (NSCCI). Dr. Saunders's vision was a comprehensive, coordinated, and integrated clinical program for children with medical complexity that was informed by research evidence. The objective of this review was to evaluate the impact of targeted philanthropic funding on research, clinical care, and policy. Since 2006, NSCCI funds have been used to support interdisciplinary and innovative research. Funded projects have reflected a breadth of research questions (clinical care, training, health system delivery, social determinants), disciplines, and methods, and the research results have informed and helped build an internationally renowned clinical program in complex care. Philanthropic funding was the foundation for the NSCCI, which over the last 15 years has built research and clinical capacity, catalysed clinical and research networks, helped train paediatric residents, influenced policy, and improved the health and well-being of children with medical complexity and their families across Canada, and beyond.
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Importance: Identifying conditions that could be prioritized for research based on health care system burden is important for developing a research agenda for the care of hospitalized children. However, existing prioritization studies are decades old or do not include data from both pediatric and general hospitals. Objective: To assess the prevalence, cost, and variation in cost of pediatric hospitalizations at all general and pediatric hospitals in Ontario, Canada, with the aim of identifying conditions that could be prioritized for future research. Design, Setting, and Participants: This population-based cross-sectional study used health administrative data from 165 general and pediatric hospitals in Ontario, Canada. Children younger than 18 years with an inpatient hospital encounter between April 1, 2014, and March 31, 2019, were included. Main Outcomes and Measures: Condition-specific prevalence, cost of pediatric hospitalizations, and condition-specific variation in cost per inpatient encounter across hospitals. Variation in cost was evaluated using (1) intraclass correlation coefficient (ICC) and (2) number of outlier hospitals. Costs were adjusted for inflation to 2018 US dollars. Results: Overall, 627â¯314 inpatient hospital encounters (44.8% among children younger than 30 days and 53.0% among boys) at 165 hospitals (157 general and 8 pediatric) costing $3.3 billion were identified. A total of 408â¯003 hospitalizations (65.0%) and $1.4 billion (43.8%) in total costs occurred at general hospitals. Among the 50 most prevalent and 50 most costly conditions (of 68 total conditions), the top 10 highest-cost conditions accounted for 55.5% of all costs and 48.6% of all encounters. The conditions with highest prevalence and cost included low birth weight (86.2 per 1000 encounters; $676.3 million), preterm newborn (38.0 per 1000 encounters; $137.4 million), major depressive disorder (20.7 per 1000 encounters; $78.3 million), pneumonia (27.3 per 1000 encounters; $71.6 million), other perinatal conditions (68.0 per 1000 encounters; $65.8 million), bronchiolitis (25.4 per 1000 encounters; $54.6 million), and neonatal hyperbilirubinemia (47.9 per 1000 encounters; $46.7 million). The highest variation in cost per encounter among the most costly medical conditions was observed for 2 mental health conditions (other mental health disorders [ICC, 0.28] and anxiety disorders [ICC, 0.19]) and 3 newborn conditions (intrauterine hypoxia and birth asphyxia [ICC, 0.27], other perinatal conditions [ICC, 0.17], and surfactant deficiency disorder [ICC, 0.17]). Conclusions and Relevance: This population-based cross-sectional study of hospitalized children identified several newborn and mental health conditions as having the highest prevalence, cost, and variation in cost across hospitals. Findings of this study can be used to develop a research agenda for the care of hospitalized children that includes general hospitals and to ultimately build a more substantial evidence base and improve patient outcomes.