Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools.

Background: Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods: We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results: PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion: The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

Studying How Patient Engagement Influences Research: A Mixed Methods Study.

BACKGROUND: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence. METHODS: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study. RESULTS: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable. CONCLUSION: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs.

Volume loss during muscle reinnervation surgery is correlated with reduced CMAP amplitude but not reduced force output in a rat hindlimb model.

Introduction: Muscle reinnervation (MR) surgery offers rehabilitative benefits to amputees by taking severely damaged nerves and providing them with new denervated muscle targets (DMTs). However, the influence of physical changes to muscle tissue during MR surgery on long-term functional outcomes remains understudied. Methods: Our rat hindlimb model of MR surgery utilizes vascularized, directly neurotized DMTs made from the lateral gastrocnemius (LG), which we employed to assess the impact of muscle tissue size on reinnervation outcomes, specifically pairing the DMT with the transected peroneal nerve. We conducted MR surgery with both DMTs at full volume and DMTs with partial volume loss of 500 mg at the time of surgery (n = 6 per group) and measured functional outcomes after 100 days of reinnervation. Compound motor action potentials (CMAPs) and isometric tetanic force production was recorded from reinnervated DMTs and compared to contralateral naïve LG muscles as positive controls. Results: Reinnervated DMTs consistently exhibited lower mass than positive controls, while DMTs with partial volume loss showed no significant mass reduction compared to full volume DMTs (p = 0.872). CMAP amplitudes were lower on average in reinnervated DMTs, but a broad linear correlation also exists between muscle mass and maximum CMAP amplitude irrespective of surgical group (R2 = 0.495). Surprisingly, neither MR group, with or without volume loss, demonstrated decreased force compared to positive controls. The average force output of reinnervated DMTs, as a fraction of the contralateral LG's force output, approached 100% for both MR groups, a notable deviation from the 9.6% (±6.3%) force output observed in our negative control group at 7 days post-surgery. Tissue histology analysis revealed few significant differences except for a marked decrease in average muscle fiber area of reinnervated DMTs with volume loss compared to positive controls (p = 0.001). Discussion: The results from our rat model of MR suggests that tissue electrophysiology (CMAPs) and kinesiology (force production) may recover on different time scales, with volumetric muscle loss at the time of MR surgery not significantly reducing functional outcome measurements for the DMTs after 100 days of reinnervation.

An exploration of COVID-19 vaccination models for newcomer refugees and immigrants in Calgary, Canada.

BACKGROUND: The World Health Organization stresses the need for tailored COVID-19 models of vaccination to meet the needs of diverse populations and ultimately reach high rates of vaccination. However, little evidence exists on how COVID-19 models of vaccination operated in the novel context of the pandemic, how vulnerable populations, such as refugees, experience COVID-19 vaccination systems in high-income countries, and what lessons may be learned from vaccination efforts with vulnerable populations. To address this gap, this study explored COVID-19 vaccine delivery models available to newcomer refugees and immigrants, and refugee experiences across different COVID-19 vaccine delivery models in Calgary, Canada, and surrounding area in 2021 and 2022, to understand the barriers, strengths, and strategies of models to support access to COVID-19 vaccination for newcomer refugees and immigrants. METHODS: Researchers conducted structured interviews with Government Assisted Refugees (n = 39), and semi-structured interviews with Privately Sponsored Refugees (n = 6), private refugee sponsors (n = 3), and stakeholders involved in vaccination systems (n = 13) in 2022. Thematic analysis was conducted to draw out themes related to barriers, strengths, and strategies of vaccine delivery models and the intersections with patient experiences. RESULTS: Newcomer refugee and immigrant focused vaccination models and strategies were explored. They demonstrated how partnerships between organizations, multi-pronged approaches, and culturally responsive services were crucial to navigate ongoing and emergent factors, such as vaccine hesitancy, mandates, and other determinants of under-vaccination. Many vaccination models presented through interviews were not specific to refugees and included immigrants, temporary residents, ethnocultural community members, and other vulnerable populations in their design. CONCLUSIONS: Increasing COVID-19 vaccine uptake for newcomer refugees and immigrants, is complex and requires trust, ongoing information provision, and local partnerships to address ongoing and emerging factors. Three key policy implications were drawn. First, findings demonstrated the need for flexible funding to offer outreach, translation, cultural interpretation, and to meet the basic needs of patients prior to engaging in vaccinations. Second, the research showed that embedding culturally responsive strategies within services ensures community needs are met. Finally, collaborating with partners that reflect the diverse needs of communities is crucial for the success of any health efforts serving newcomers.

A scoping review of decision-making tools to support substitute decision-makers for adults with impaired capacity.

BACKGROUND: Substitute decision-makers (SDMs) make decisions that honor medical, personal, and end-of-life wishes for older adults who have lost capacity, including those with dementia. However, SDMs often lack support, information, and problem-solving tools required to make decisions and can suffer with negative emotional, relationship, and financial impacts. The need for adaptable supports has been identified in prior meta-analyses. This scoping review identifies evidence-based decision-making resources/tools for SDMs, outlines domains of support, and determines resource/tool effectiveness and/or efficacy. METHODS: The scoping review used the search strategy: Population-SDMs for older adults who have lost decision-making capacity; Concept-supports, resources, tools, and interventions; Context-any context where a decision is made on behalf of an adult (>25 years). Databases included MEDLINE, Embase, CINAHL, PsycINFO, and Abstracts in Social Gerontology and SocIndex. Tools were scored by members on the research team, including patient partners, based on domains of need previously identified in prior meta-analyses. RESULTS: Two reviewers independently screened 5279 citations. Articles included studies that evaluated a resource/tool that helped a family/friend/caregiver SDMs outside of an ICU setting. 828 articles proceeded onto full-text screening, and 25 articles were included for data extraction. The seventeen tools identified focused on different time points/decisions in the dementia trajectory, and no single tool encompassed all the domains of caregiver decision-making needs. CONCLUSION: Existing tools may not comprehensively support caregiver needs. However, combining tools into a toolkit and considering their application relevant to the caregiver's journey may start to address the gap in current supports.

COVID-19 Vaccinations, Trust, and Vaccination Decisions within the Refugee Community of Calgary, Canada.

Refugee decisions to vaccinate for COVID-19 are a complex interplay of factors which include individual perceptions, access barriers, trust, and COVID-19 specific factors, which contribute to lower vaccine uptake. To address this, the WHO calls for localized solutions to increase COVID-19 vaccine uptake for refugees and evidence to inform future vaccination efforts. However, limited evidence engages directly with refugees about their experiences with COVID-19 vaccinations. To address this gap, researchers conducted qualitative interviews (N = 61) with refugees (n = 45), sponsors of refugees (n = 3), and key informants (n = 13) connected to local COVID-19 vaccination efforts for refugees in Calgary. Thematic analysis was conducted to synthesize themes related to vaccine perspectives, vaccination experiences, and patient intersections with policies and systems. Findings reveal that refugees benefit from ample services that are delivered at various stages, that are not solely related to vaccinations, and which create multiple positive touch points with health and immigration systems. This builds trust and vaccine confidence and promotes COVID-19 vaccine uptake. Despite multiple factors affecting vaccination decisions, a key reason for vaccination was timely and credible information delivered through trusted intermediaries and in an environment that addressed refugee needs and concerns. As refugees placed trust and relationships at the core of decision-making and vaccination, it is recommended that healthcare systems work through trust and relationships to reach refugees. This can be targeted through culturally responsive healthcare delivery that meets patients where they are, including barrier reduction measures such as translation and on-site vaccinations, and educational and outreach partnerships with private groups, community organizations and leaders.

Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study.

BACKGROUND: In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and appropriate. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them. This study aimed to prioritize PROMs by youth and family/caregiver based on feasibility, relevance, and overall importance to be used in the clinical care of youth living with anxiety and/or depression. METHODS: Ten validated and widely used PROMs were presented to the patients and family/caregivers. Nominal group techniques were employed to prioritize the PROMs based on feasibility, relevance, and overall importance. RESULTS: For patients and families/caregivers, the PROMs, Revised Child Anxiety and Depression Scale (RCAD 25), and The Young Person's Core (YP-CORE) were the highest priorities. Both felt that RCAD 25 was comprehensive, short, easy, and quick to complete, whereas regarding YP-CORE, patients and family/caregivers thought it was also short and relevant. Due to some specific concerns, the Strength and Difficulties Questionnaire and Child Health Questionnaire were the lowest prioritized by patients and family/caregivers. CONCLUSION: It is of utmost importance that patient's and family/caregivers' voices or opinions are considered while selecting and implementing PROMs in mental health settings. Our study provides practical recommendations around measures best suited to achieve this.

The role of IL10 and IL17 gene polymorphisms in treatment response in children and adolescents with severe asthma.

OBJECTIVE: To determine whether polymorphisms of the IL10 and IL17 genes are associated with severe asthma control and bronchodilator reversibility in children and adolescents with severe asthma. METHODS: This was a cross-sectional study, nested within a prospective cohort study of patients with severe asthma. Two outcomes were evaluated: asthma control and bronchodilator reversibility. We extracted DNA from peripheral blood and genotyped three single nucleotide polymorphisms: rs3819024 and rs2275913 in the IL17A gene; and rs3024498 in the IL10 gene. For the association analyses, we performed logistic regression in three genetic models (allelic, additive, and dominant). RESULTS: The rs3024498 C allele in the IL10 gene was associated with failure to achieve asthma control despite regular treatment (p = 0.02). However, the G allele of the IL17A rs3819024 polymorphism was associated with failure to respond to stimulation with a b2 agonist. The rs2275913 polymorphism of the IL17A gene showed no relationship with asthma control or bronchodilator reversibility. CONCLUSIONS: In pediatric patients with severe asthma, the IL10 polymorphism appears to be associated with failure to achieve clinical control, whereas the IL17A polymorphism appears to be associated with a worse bronchodilator response. Knowledge of the involvement of these polymorphisms opens future directions for pharmacogenetic studies and for the implementation of individualized therapeutic management of severe asthma in pediatric patients.

Person-centred quality indicators are associated with unplanned care use following hospital discharge.

OBJECTIVE: Performance indicators are used to evaluate the quality of healthcare services. The majority of these, however, are derived solely from administrative data and rarely incorporate feedback from patients who receive services. Recently, our research team developed person-centred quality indicators (PC-QIs), which were co-created with patients. It is unknown whether these PC-QIs are associated with unplanned healthcare use following discharge from hospital. DESIGN: A retrospective, cross-sectional study. METHODS: Survey responses were obtained from April 2014 to September 2020 using the Canadian Patient Experiences Survey - Inpatient Care instrument. Logistic regression models were used to predict the link between eight PC-QIs and two outcomes; unplanned readmissions within 30 days and emergency department visits within 7 days. RESULTS: A total of 114 129 surveys were included for analysis. 6.0% of respondents (n=6854) were readmitted within 30 days, and 9.9% (n=11 287) visited an emergency department within 7 days of their index discharge. In adjusted models, 'top box' responses for communication between patients and physicians (adjusted OR (aOR)=0.82, 95% CI: 0.77 to 0.88), receiving information about taking medication (aOR=0.86, 95% CI: 0.80 to 0.92) and transition planning at hospital discharge (aOR=0.79, 95% CI: 0.73 to 0.85) were associated with lower odds of emergency department visit.Likewise, 'top box' responses for overall experience (aOR=0.87, 95% CI: 0.82 to 0.93), communication between patients and physicians (aOR=0.73, 95% CI: 0.67 to 0.80) and receiving information about taking medication (aOR=0.90, 95% CI: 0.83 to 0.98), were associated with lower odds of readmission. CONCLUSIONS: This study demonstrates that patient reports of their in-hospital experiences may have value in predicting future healthcare use. In developing the PC-QIs, patients indicated which elements of their hospital care matter most to them, and our results show agreement between subjective and objective measures of care quality. Future research may explore how current readmission prediction models may be augmented by person-reported experiences.

Examining the Relationship Between Screening for Postpartum Depression and Associated Child Health Service Utilization and Costs: A Study Using the All Our Families Cohort and Administrative Data.

INTRODUCTION: Despite a recognized association between maternal postpartum depression (PPD) and adverse child health outcomes, evidence examining the relationship between PPD symptoms and associated child health service utilization and costs remains unclear. In addition, there is a paucity of evidence describing the relationship between early identification of maternal PPD and associated health service utilization and costs for children. This study aims to address this gap by describing the secondary associations of screening for maternal PPD and annual health service utilization and costs for children over their first five years of life. METHODS: Mothers and children enrolled in the prospective All Our Families cohort were linked to provincial administrative data in Alberta, Canada. Multivariable generalized linear models were used to estimate the average annual inpatient, outpatient, physician, and total health service utilization and costs from a public health system perspective for children of mothers screened high risk for PPD, low/moderate risk for PPD, or unscreened. RESULTS: Total mean costs were greatest for children during their first year of life than other years. Those whose mothers were not screened had significantly lower costs compared to those whose mothers were screened low/moderate risk, despite equivalent health service utilization. DISCUSSION: Findings from this study describe the secondary associations of screening for maternal PPD using a public health system perspective. More research is required to fully understand variations in health costs for children across maternal PPD screening categories.

This study describes the relationship between maternal PPD screening status and annual child health service utilization and costs over the first five years of age. Findings from this administrative data study will support decision-makers in understanding the secondary effects associated with maternal PPD screening and inform future cost-effectiveness analyses of PPD screening interventions using a maternal-child health perspective.

Response shift in coronary artery disease.

PURPOSE: Patients with coronary artery disease (CAD) experience significant angina symptoms and lifestyle changes. Revascularization procedures can result in better patient-reported outcomes (PROs) than optimal medical therapy (OMT) alone. This study evaluates the impact of response shift (RS) on changes in PROs of patients with CAD across treatment strategies. METHODS: Data were from patients with CAD in the Alberta Provincial Project on Outcome Assessment in Coronary Heart Disease (APPROACH) registry who completed the 16-item Canadian version of the Seattle Angina Questionnaire at 2 weeks and 1 year following a coronary angiogram. Multi-group confirmatory factor analysis (MG-CFA) was used to assess measurement invariance across treatment groups at week 2. Longitudinal MG-CFA was used to test for RS according to receipt of coronary artery bypass grafting (CABG), percutaneous coronary intervention (PCI), or optimal medical therapy (OMT) alone. RESULTS: Of the 3116 patients included in the analysis, 443 (14.2%) received CABG, 2049(65.8%) PCI, and the remainder OMT alone. The MG-CFA revealed a partial-strong invariance across the treatment groups at 2 weeks (CFI = 0.98, RMSEA [90% CI] = 0.05 [0.03, 0.06]). Recalibration RS was detected on the Angina Symptoms and Burden subscale and its magnitude in the OMT, PCI, and CABG groups were 0.32, 0.28, and 0.53, respectively. After adjusting for RS effects, the estimated target changes were largest in the CABG group and negligible in the OMT group. CONCLUSION: Adjusting for RS is recommended in studies that use SAQ-CAN to assess changes in patients with CAD who have received revascularization versus OMT alone.

Novel 2-(5-Arylthiophen-2-yl)-benzoazole Cyclometalated Iridium(III) dppz Complexes Exhibit Selective Phototoxicity in Cancer Cells by Lysosomal Damage and Oncosis.

A second-generation series of biscyclometalated 2-(5-aryl-thienyl)-benzimidazole and -benzothiazole Ir(III) dppz complexes [Ir(C^N)2(dppz)]+, Ir1-Ir4, were rationally designed and synthesized, where the aryl group attached to the thienyl ring was p-CF3C6H4 or p-Me2NC6H4. These new Ir(III) complexes were assessed as photosensitizers to explore the structure-activity correlations for their potential use in biocompatible anticancer photodynamic therapy. When irradiated with blue light, the complexes exhibited high selective potency across several cancer cell lines predisposed to photodynamic therapy; the benzothiazole derivatives (Ir1 and Ir2) were the best performers, Ir2 being also activatable with green or red light. Notably, when irradiated, the complexes induced leakage of lysosomal content into the cytoplasm of HeLa cancer cells and induced oncosis-like cell death. The capability of the new Ir complexes to photoinduce cell death in 3D HeLa spheroids has also been demonstrated. The investigated Ir complexes can also catalytically photo-oxidate NADH and photogenerate 1O2 and/or •OH in cell-free media.

Patient-reported experiences and outcomes of virtual care during COVID-19: a systematic review.

INTRODUCTION: The onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care quality from the patient's perspective. This poses challenges to ensuring that patient-centered care is upheld within virtual environments. To address this, the study's objective was to review how virtual care has impacted patient experiences and outcomes during COVID-19, through the use of patient-reported experience and outcome measures (PREMs and PROMs), respectively. METHODS: A systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines to evaluate patient responsiveness to virtual care during COVID-19. Using an exhaustive search strategy, relevant peer-reviewed articles published between January 2020 and 2022 were pulled from MEDLINE, CINAHL, EMBASE, and PsychInfo databases. Study quality was independently assessed by two reviewers using the Mixed Methods Appraisal Tool. A patient partner was consulted throughout the study to provide feedback and co-conduct the review. RESULTS: After removing duplicates, 6048 articles underwent title and abstract review, from which 644 studies were included in the full-text review stage. Following this, 102 articles were included in the study. Studies were published in 20 different countries, were predominantly cross-sectional, and reported on the delivery of virtual care in specialized adult outpatient settings. This review identified 29 validated PREMs and 43 PROMs. Several advantages to virtual care were identified, with patients citing greater convenience, (such as saving travel time and cost, less waiting experienced to see care providers) and increased protection from viral spread. Some studies also reported challenges patients and caregivers faced with virtual care, including feeling rushed during the virtual care appointment, lack of physical contact or examination presenting barriers, difficulty with communicating symptoms, and technology issues. CONCLUSION: This review provides supportive evidence of virtual care experiences during the COVID-19 pandemic from patient and caregiver perspectives. This research provides a comprehensive overview of what patient-reported measures can be used to record virtual care quality amid and following the pandemic. Further research into healthcare professionals' perspectives would offer a supportive lens toward a strong person-centered healthcare system.

Neonatal CD4+T cells have a characteristic transcriptome and epigenome and respond to TCR stimulation with proliferation and yet a limited immune response.

The adaptive immune response is coordinated by CD4+ T cells, which determine the type and strength of the immune response and the effector cells involved. It has been reported that CD4+ T cells are less responsive in neonates, leading to low activation of the cellular response and poor antibody production by B cells. This low response is essential for the tolerant window that favors birth transition from the sterile environment in the womb to the outside world, but leaves neonates vulnerable to infection, which is still an important health issue. Neonates have a high morbidity and mortality rate due to infections, and the molecular reasons are still understudied. We asked whether the neonatal naïve CD4+ T cells have a genomic program that predisposes them to a low response. Therefore, we evaluated the transcriptome and epigenome of human neonatal and adult naive CD4+ T cells. Our results point to a gene expression profile forming a distinct regulatory network in neonatal cells, which favors proliferation and a low T cell response. Such expression profile is supported by a characteristic epigenetic landscape of neonatal CD4+ T cells, which correlates with the characteristic transcriptome of the neonatal cells. These results were confirmed by experiments showing a low response to activation signals, higher proliferation and lower expression of cytokines of neonatal CD4+ T cells as compared to adult cells. Understanding this network could lead to novel vaccine formulations and better deal with life-threatening diseases during this highly vulnerable period of our lives.

Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.

BACKGROUND: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.

Operationalizing the principles of patient engagement through a Patient Advisory Council: Lessons and recommendations.

BACKGROUND: Inclusiveness, Support, Mutual Respect and Co-Build are the four pillars of patient engagement according to the Strategy for Patient-Oriented Research (SPOR). The aim of this manuscript is to describe the operationalization of these principles through the creation of a Patient Advisory Council (PAC) for the research study titled 'Re-Purposing the Ordering of Routine laboratory Tests (RePORT)'. METHODS: Researchers collaborated with the Alberta SPOR SUPPORT Unit (AbSPORU) Patient Engagement Team to create a diverse PAC. Recruitment was intentional and included multiple perspectives and experiences. PAC meetings were held monthly, and patient research partners received support to function as co-chairs of the PAC. Patient research partners were offered training, support and tailored modalities of compensation to actively engage with the PAC. Regular member check-ins occurred through reflexivity and a formal evaluation of PAC member engagement. RESULTS: The PAC included between 9 and 11 patient research partners, principal investigator, research study coordinator, improvement scientist, resident physician and support members from the AbSPORU team. Twelve monthly PAC meetings were held during the first phase of the project. The PAC made course-changing contributions to study design including study objectives, recruitment poster, interview guide and development of codes for thematic analysis. Patient research partners largely felt that their opinions were valued. Diversity in the PAC membership enhanced access to diverse patient participants. Furthermore, support for co-chairs and patient research partner members enabled active engagement in research. In addition, a culture of mutual respect facilitated patient partner engagement, and co-design approaches yielded rich research outputs. CONCLUSIONS: Collaboration between research teams and Patient Engagement Teams can promote effective patient engagement through a PAC. Deliberate and flexible strategies are needed to manage the PAC to create an ecology of Inclusiveness, Support, Mutual Respect, and Co-Build for meaningful patient engagement. PATIENT OR PUBLIC CONTRIBUTION: Patient research partners were involved in the decision to write this manuscript and collaborated equitably in the conception and development of this manuscript, including providing critical feedback. Patient research partners were active members of the PAC and informed the research project design, participant recruitment strategies, data collection and analysis, and will be involved in the implementation and dissemination of results. They are currently involved in the co-development of a patient engagement strategy using a Human-Centered Design process.

Variation in parental experiences with their child's hospitalization over the COVID-19 pandemic.

BACKGROUND: Hospitals and healthcare workers have been greatly impacted by the COVID-19 pandemic. The potential impacts upon the patient experience have been less documented, particularly in the pediatric setting. Our aim was to examine how parental experiences with their child's hospitalization varied during the COVID-19 pandemic at two children's hospitals in Alberta, Canada. METHODS: A random sample of parents were surveyed within six weeks of their child's discharge from Alberta's two children's hospitals. Surveys were administered using the Alberta Pediatric Inpatient Experiences Survey (APIES) - a validated instrument used to assess parental experiences during their child's hospitalization. Surveys were linked with administrative inpatient records. Three cohorts were created based on hospital discharge date: Pre-COVID (Pre: April 2019 to March 2020), COVID year one (C1: April 2020 to March 2021), and COVID year two (C2: April 2021 to March 2022). We examined 48 survey questions, including four overall rating scales. Survey responses were Likert scales. These were transformed to normalized scores from 0 (worst) to 100 (best). Differences between cohorts were assessed using ANOVA and the post-hoc Tukey test. RESULTS: A total of 3,611 surveys (1,314 Pre; 997 C1; 1,300 C2) were completed over the three-year period. Five questions showed differences between the Pre and C1 periods, six showed differences between Pre and C2, and 13 showed differences between C1 and C2. Among these questions, scores pre-COVID were lower than COVID year one, while results in COVID year two were lower than pre-COVID and COVID year one. Thirty-one survey questions showed no statistical differences between the three time periods. For the overall ratings, only hospital rating showed a difference in any of the periods (91.4 C1 vs. 90.2 C2). Overall ratings of doctors, nurses, and recommendation of the hospital to others showed no differences. CONCLUSION: This study showed that the experiences of parents during the first year of the COVID-19 pandemic were mildly better or comparable to historical results. This changed over the following year, where lower scores were reported on 13 questions.

Exploring the outcomes of research engagement using the observation method in an online setting.

OBJECTIVE: The objective of this study was to explore the outcomes of research engagement (patient engagement, PE) in the context of qualitative research. DESIGN: We observed engagement in two groups comprised of patients, clinicians and researchers tasked with conducting a qualitative preference exploration project in inflammatory bowel disease. One group was led by a patient research partner (PLG, partner led group) and the other by an academic researcher (RLG, researcher led group). A semistructured guide and a set of critical outcomes of research engagement were used as a framework to ground our analysis. SETTING: The study was conducted online. PARTICIPANTS: Patient research partners (n=5), researchers (n=5) and clinicians (n=4) participated in this study. MAIN OUTCOME MEASURES: Transcripts of meetings, descriptive and reflective observation data of engagement during meetings and email correspondence between group members were analysed to identify the outcomes of PE. RESULTS: Both projects were patient-centred, collaborative, meaningful, rigorous, adaptable, ethical, legitimate, understandable, feasible, timely and sustainable. Patient research partners (PRPs) in both groups wore dual hats as patients and researchers and influenced project decisions wearing both hats. They took on advisory and operational roles. Collaboration seemed easier in the PLG than in the RLG. The RLG PRPs spent more time than their counterparts in the PLG sharing their experience with biologics and helping their group identify a meaningful project question. A formal literature review informed the design, project materials and analysis in the RLG, while the formal review informed the project materials and analysis in the PLG. A PRP in the RLG and the PLG lead leveraged personal connections to facilitate recruitment. The outcomes of both projects were meaningful to all members of the groups. CONCLUSIONS: Our findings show that engagement of PRPs in research has a positive influence on the project design and delivery in the context of qualitative research in both the patient-led and researcher-led group.

Implementing paediatric patient-reported outcome measures in outpatient asthma clinics: a feasibility assessment study.

OBJECTIVE: Implementation of patient-reported outcome measures (PROMs) is limited in paediatric routine clinical care. The KidsPRO programme has been codesigned to facilitate the implementation of PROMs in paediatric healthcare settings. Therefore, this study (1) describes the development of innovative KidsPRO programme and (2) reports on the feasibility of implementing PedsQL (Pediatric Quality of Life Inventory) PROM in asthma clinics using the KidsPRO programme. DESIGN: Feasibility assessment study. SETTING: Outpatient paediatric asthma clinics in the city of Calgary, Canada. PARTICIPANTS: Five paediatric patients, four family caregivers and three healthcare providers were recruited to pilot the implementation of PedsQL PROM using KidsPRO. Then, a survey was used to assess its feasibility among these study participants. MAIN OUTCOME MEASURES: Participants' understanding of using PROMs, the adequacy of support provided to them, the utility of using PROMs as part of their appointment, and their satisfaction with using PROMs. ANALYSES: The quantitative data generated through closed-ended questions was analysed and represented in the form of bar charts for each category of study participants (ie, patients, their family caregivers and healthcare providers). The qualitative data generated through the open-ended questions were content analysed and categorised into themes. RESULTS: The experience of using PROMs was overwhelmingly positive among patients and their family caregivers, results were mixed among healthcare providers. Qualitative data collected through open-ended questions also complemented the quantitative findings. CONCLUSION: The evidence from this study reveals that the implementation of PROMs in routine paediatric clinical care asthma clinics in Alberta is seems to be feasible.

Nivel competencial adquirido en el abordaje de la violencia de género en estudiantes de Enfermería / Competence level achieved by Nursing students for addressing gender-based violence

Objetivo: conocer el nivel competencial en violencia de género de los estudiantes de 4º de Grado de Enfermería y comparar su nivel competencial con el adquirido por estudiantes de 1º.Método: estudio descriptivo transversal. Población de estudio: estudiantado de 1º y 4º curso del Grado en Enfermería de la Universidad Autónoma de Madrid. Recogida de datos: cuestionario validado Physician Readiness To Manage Intimate Partner Violence Survey (PREMIS).Resultados: participaron 47 estudiantes; el 96,1% en 1º y el 85,7% en 4º eran mujeres. Un 80,8% (n= 21) del estudiantado de 1º y un 57,1% (n= 12) de 4º señalaron no haber recibido ninguna formación sobre la violencia sobre la mujer infligida por su pareja (VMIP) antes de iniciar el grado. El 52,4% (n= 11) de 4º afirmó haber recibido formación teórica frente al 34,6% (n= 9) de 1º; y formación práctica el 23,8% (n= 5) de 4º frente al 3,8% (n= 1) de 1º. El alumnado de 4º obtuvo puntuaciones más elevadas en los ítems referidos a la autopercepción sobre su capacidad de actuación ante la víctima y conocimiento sobre violencia de compañero íntimo. Tanto en 1º como en 4º se identificó ser mujer como principal factor de riesgo para sufrir maltrato, y se sintieron con menos capacitación en la cumplimentación de los requisitos legales asociados a la notificación del maltrato.Conclusión: la implantación de la guía docente mejora la capacidad del estudiantado para la detección de los casos de VMIP, mostrando dificultades para aplicar el conocimiento adquirido a situaciones concretas. (AU)

Objective: to understand the competence level achieved by Nursing Degree students in their fourth year for addressing gender-based violence, and to compare their competence level with that acquired by first year students.Method: a descriptive cross-sectional study. Study population: 1st and 4th students of Nursing Degree at the Universidad Autónoma de Madrid (Madrid, Spain). Data collection: validated questionnaire Physician Readiness to Manage Intimate Partner Violence Survey (PREMIS).Results: 47 Nursing students; 96.1% in first year and 85.7% in fourth year were female. 80.8% (n= 21) of first year students and 57.1% (n= 12) of fourth year claimed that they had never received any training on Intimate Partner Violence against Women (IPVAW) before starting their degree. 52.4% (n= 11) of fourth year students stated that they had received theoretical training vs. 34.6% (n= 9) of first year students; and 23.8% (n= 5) of fourth year students had received practical training vs. 3.8% (n= 1) of first year students. Students in their fourth year achieved higher scores in those items related to self-perception of their skills of action towards the victim, and knowledge about the IPVAW. In first and fourth year, they identified that being a woman was a top factor of risk for suffering abuse. Students from both years felt less qualified to complete the legal requirements associated with abuse reporting.Conclusion: the implementation of a teaching guide improved the ability of students to detect cases of IPVAW, showing the difficulties to apply the knowledge acquired into specific scenarios. (AU)