Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Severe Respiratory Disease Among Children With and Without Medical Complexity During the COVID-19 Pandemic.

Importance: Severe respiratory disease declined during the COVID-19 pandemic, partially due to decreased circulation of respiratory pathogens. However, the outcomes of children with higher risk have not been described using population-based data. Objective: To compare respiratory-related hospitalizations, intensive care unit (ICU) admissions, and mortality during the pandemic vs prepandemic, among children with medical complexity (CMC) and without medical complexity (non-CMC). Design, Setting, and Participants: This population-based repeated cross-sectional study used Canadian health administrative data of children aged younger than 18 years in community and pediatric hospitals during a pandemic period (April 1, 2020, to February 28, 2022) compared with a 3-year prepandemic period (April 1, 2017, to March 31, 2020). The pandemic period was analyzed separately for year 1 (April 1, 2020, to March 31, 2021) and year 2 (April 1, 2021, to February 28, 2022). Statistical analysis was performed from October 2022 to April 2023. Main Outcomes and Measures: Respiratory-related hospitalizations, ICU admissions, and mortality before and during the pandemic among CMC and non-CMC. Results: A total of 139 078 respiratory hospitalizations (29 461 respiratory hospitalizations for CMC and 109 617 for non-CMC) occurred during the study period. Among CMC, there were fewer respiratory hospitalizations in both 2020 (rate ratio [RR], 0.44 [95% CI, 0.42-0.46]) and 2021 (RR, 0.55 [95% CI, 0.51-0.62]) compared with the prepandemic period. Among non-CMC, there was an even larger relative reduction in respiratory hospitalizations in 2020 (RR, 0.18 [95% CI, 0.17-0.19]) and a similar reduction in 2021 (RR, 0.55 [95% CI, 0.54-0.56]), compared with the prepandemic period. Reductions in ICU admissions for respiratory illness followed a similar pattern for CMC (2020: RR, 0.56 [95% CI, 0.53-0.59]; 2021: RR, 0.66 [95% CI, 0.63-0.70]) and non-CMC (2020: RR, 0.22 [95% CI, 0.20-0.24]; RR, 0.65 [95% CI, 0.61-0.69]). In-hospital mortality for these conditions decreased among CMC in both 2020 (RR, 0.63 [95% CI, 0.51-0.77]) and 2021 (RR, 0.72 [95% CI, 0.59-0.87]). Conclusions and Relevance: This cross-sectional study found a substantial decrease in severe respiratory disease resulting in hospitalizations, ICU admissions, and mortality during the first 2 years of the pandemic compared with the 3 prepandemic years. These findings suggest that future evaluations of the effect of public health interventions aimed at reducing circulating respiratory pathogens during nonpandemic periods of increased respiratory illness may be warranted.

Effectiveness of Structured Care Coordination for Children With Medical Complexity: The Complex Care for Kids Ontario (CCKO) Randomized Clinical Trial.

Importance: Children with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care. Objective: To compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care. Design, Setting, and Participants: This randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months. Intervention: Assignment of a nurse practitioner-pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care. Main Outcomes and Measures: Co-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost. Results: Of 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P < .001), with no difference between groups for the other 2 co-primary outcomes. There were no group differences for secondary outcomes of child outcomes, parent outcomes, and health care system utilization and cost. At 24 months, when both groups were receiving the intervention, no primary outcome differences were observed. Total health care costs in the second year were lower for the intervention group (median, CAD$17 891; IQR, 6098-61 346; vs CAD$37 524; IQR, 9338-119 547 [US $13 415; IQR, 4572-45 998; vs US $28 136; IQR, 7002-89 637]; P = .01). Conclusions and Relevance: The CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions. Trial Registration: ClinicalTrials.gov Identifier: NCT02928757.

Implementing a Care Coordination Strategy for Children with Medical Complexity in Ontario, Canada: A Process Evaluation.

Introduction: A provincial strategy to expand care coordination and integration of care for children with medical complexity (CMC) was launched in Ontario, Canada in 2015. A process evaluation of the roll-out examined the processes, mechanisms of impact, and contextual factors affecting the implementation of the Complex Care for Kids Ontario (CCKO) intervention strategy. Methods: This process evaluation was conducted and analyzed according to the United Kingdom Medical Research Council (UK-MRC) process evaluation framework. To evaluate the implementation of the CCKO intervention, a multi-method study design was used, including semi-structured interviews with 38 key informants and 10 families of CMC involved in CCKO. To further understand implementation details across regional sites, provincial-level implementation plans, and process documents were reviewed. Discussion: Strengths of CCKO included novel collaborations and partnerships between complex care teams, community partners and regional sites. Issues relating to communication and coordination across care sectors created challenges to holistic care coordination objectives. Provincial system fragmentation limited the ability of CCKO to provide seamless care coordination due to the multiple care sectors involved. Conclusion: This study adds to the understanding of the processes involved in a population-level care coordination intervention for CMC. Lessons learned through CCKO can help facilitate reproducibility and necessary adjustments of the intervention in different settings.

Maternal-Newborn Health System Changes and Outcomes in Ontario, Canada, During Wave 1 of the COVID-19 Pandemic-A Retrospective Study.

OBJECTIVE: To determine the population-level impact of COVID-19 pandemic-related obstetric practice changes on maternal and newborn outcomes. METHODS: Segmented regression analysis examined changes that occurred 240 weeks pre-pandemic through the first 32 weeks of the pandemic using data from Ontario's Better Outcomes Registry & Network. Outcomes included birth location, length of stay, labour analgesia, mode of delivery, preterm birth, and stillbirth. Immediate and gradual effects were modelled with terms representing changes in intercepts and slopes, corresponding to the start of the pandemic. RESULTS: There were 799 893 eligible pregnant individuals included in the analysis; 705 767 delivered in the pre-pandemic period and 94 126 during the pandemic wave 1 period. Significant immediate decreases were observed for hospital births (relative risk [RR] 0.99; 95% CI 0.98-0.99), length of stay (median change -3.29 h; 95% CI -3.81 to -2.77), use of nitrous oxide (RR 0.11; 95% CI 0.09-0.13) and general anesthesia (RR 0.69; 95% CI 0.58- 0.81), and trial of labour after cesarean (RR 0.89; 95% CI 0.83-0.96). Conversely, there were significant immediate increases in home births (RR 1.35; 95% CI 1.21-1.51), and use of epidural (RR 1.02; 95% CI 1.01-1.04) and regional anesthesia (RR 1.01; 95% CI 1.01-1.02). There were no significant immediate changes for any other outcomes, including preterm birth (RR 0.99; 95% CI 0.93-1.05) and stillbirth (RR 1.11; 95% CI 0.87-1.42). CONCLUSION: Provincial health system changes implemented at the start of the pandemic resulted in immediate clinical practice changes but not insignificant increases in adverse outcomes.

Prevention and management of unprofessional behaviour among adults in the workplace: A scoping review.

BACKGROUND: Unprofessional behaviour is a challenge in academic medicine. Given that faculty are role models for trainees, it is critical to identify strategies to manage these behaviours. A scoping review was conducted to identify interventions to prevent and manage unprofessional behaviour in any workplace or professional setting. METHODS: A search of 14 electronic databases was conducted in March 2016, reference lists of relevant systematic reviews were scanned, and grey literature was searched to identify relevant studies. Experimental and quasi-experimental studies that reported on interventions to prevent or manage unprofessional behaviours were included. Studies that reported impact on any outcome were eligible. Two reviewers independently screened articles and completed data abstraction. Qualitative analysis of the definitions of unprofessional behaviour was conducted. Data were charted to describe the study, participant, intervention and outcome characteristics. RESULTS: 12,482 citations were retrieved; 23 studies with 11,025 participants were included. The studies were 12 uncontrolled before and after studies, 6 controlled before and after studies, 2 cluster-randomised controlled trials (RCTs), 1 RCT, 1 non-randomised controlled trial and 1 quasi-RCT. Four constructs were identified in the definitions of unprofessional behaviour: verbal and/or non-verbal acts, repeated acts, power imbalance, and unwelcome behaviour. Interventions most commonly targeted individuals (22 studies, 95.7%) rather than organisations (4 studies, 17.4%). Most studies (21 studies, 91.3%) focused on increasing awareness. The most frequently targeted behaviour change was sexual harassment (4 of 7 studies). DISCUSSION: Several interventions appear promising in addressing unprofessional behaviour. Most of the studies included single component, in-person education sessions targeting individuals and increasing awareness of unprofessional behaviour. Fewer studies targeted the institutional culture or addressed behaviour change.

Correction to: Engaging policy-makers, health system managers, and policy analysts in the knowledge synthesis process: a scoping review.

Following the publication of the original article [1], it was brought to our attention that the letter 'l' was unfortunately omitted from the word 'health' in the article's title.

Engaging policy-makers, health system managers, and policy analysts in the knowledge synthesis process: a scoping review.

BACKGROUND: It is unclear how to engage a wide range of knowledge users in research. We aimed to map the evidence on engaging knowledge users with an emphasis on policy-makers, health system managers, and policy analysts in the knowledge synthesis process through a scoping review. METHODS: We used the Joanna Briggs Institute guidance for scoping reviews. Nine electronic databases (e.g., MEDLINE), two grey literature sources (e.g., OpenSIGLE), and reference lists of relevant systematic reviews were searched from 1996 to August 2016. We included any type of study describing strategies, barriers and facilitators, or assessing the impact of engaging policy-makers, health system managers, and policy analysts in the knowledge synthesis process. Screening and data abstraction were conducted by two reviewers independently with a third reviewer resolving discrepancies. Frequency and thematic analyses were conducted. RESULTS: After screening 8395 titles and abstracts followed by 394 full-texts, 84 unique documents and 7 companion reports fulfilled our eligibility criteria. All 84 documents were published in the last 10 years, and half were prepared in North America. The most common type of knowledge synthesis with knowledge user engagement was a systematic review (36%). The knowledge synthesis most commonly addressed an issue at the level of national healthcare system (48%) and focused on health services delivery (17%) in high-income countries (86%). Policy-makers were the most common (64%) knowledge users, followed by healthcare professionals (49%) and government agencies as well as patients and caregivers (34%). Knowledge users were engaged in conceptualization and design (49%), literature search and data collection (52%), data synthesis and interpretation (71%), and knowledge dissemination and application (44%). Knowledge users were most commonly engaged as key informants through meetings and workshops as well as surveys, focus groups, and interviews either in-person or by telephone and emails. Knowledge user content expertise/awareness was a common facilitator (18%), while lack of time or opportunity to participate was a common barrier (12%). CONCLUSIONS: Knowledge users were most commonly engaged during the data synthesis and interpretation phases of the knowledge synthesis conduct. Researchers should document and evaluate knowledge user engagement in knowledge synthesis. REGISTRATION DETAILS: Open Science Framework ( https://osf.io/4dy53/ ).