Members Of Research Team Research Articles

Implementation of Discrepancy Evaluation Application Based on TOPSIS-TTA

One of the developments in the field of educational evaluation utilized as an evaluation tool to identify the key elements that drive the success of blended learning is the TOPSIS-TTA-based Discrepancy evaluation application. This evaluation application combines the TTA (Tat Twam Asi) concept, the TOPSIS (Technique for Order of Preference by Similarity to Ideal Solution) method, and the Discrepancy evaluation model concept. The purpose of this study is to demonstrate the implementation outcomes of the TOPSIS-TTA-based Discrepancy evaluation application at IT vocational schools in Bali, as well as the results of usage trials, final product revisions, and its dissemination. The research method used focused on the usage trial stage, final product revisions stage, dissemination stage, and implementation stage. The usage trials comprised 39 respondents, while the application test involved 150 participants. For the final product revisions, three research team members were engaged, along with 150 respondents during the dissemination activity. The assessment instruments employed during the trial usage and application testing were questionnaires. Bali’s IT vocational schools served as the study’s location. The study’s data analysis method was descriptive quantitative by converting the results of the application effectiveness percentage which has been compared with the standard effectiveness scale of eleven. The findings of this investigation suggest the effectiveness level of evaluation application including the advanced category, so that in general the evaluation application is ready to be implemented on a wide scale in the field. The significance of this study in the field of educational evaluation lies in its ability to simplify the process for evaluators in choosing high quality evaluation tools, relying on dependable trials of application implementation and usage.

Evidence for Criterion-Related Validity of Pressure-Mediated Reflection Spectroscopy for Approximating Fruit and Vegetable Consumption among Preschool Children

BackgroundSkin carotenoids are a valid biomarker for approximating fruit and vegetable consumption (FVC). Veggie Meter® (VM®, Longevity Link Corp.) is a pressure-mediated reflection spectroscopy (RS)-based device that allows for noninvasive and rapid assessment of skin-carotenoid score (SCS) in adults and children. Although VM® is established as a valid tool to measure FVC in adults, there is limited research supporting the validity evidence of the VM® to approximate FVC among preschool children. ObjectiveThe current study aims to assess evidence supporting the criterion-related validity of RS-based SCS for approximating FVC among preschool children (3–5-y old). MethodsWe collected cross-sectional data from typically developing preschool children (n = 136) attending the Child and Adult Care Food Program-participating family child care home settings (FCCHs) (n = 46) in Nebraska. Research team members collected children’s height and weight to calculate body mass index; and measured children’s SCS using the VM®. Children’s FVC in FCCHs were collected using dietary observation. In addition, parents (n = 89) completed a shortened food frequency questionnaire to report children’s FVC at home. Kendall’s Tau (τ) correlation tests were conducted to measure the association between children’s SCS with FVC in FCCHs and with parent-reported total fruit and vegetable (FV) frequency scores. ResultsChildren’s SCS were significantly correlated with their mean FVC in FCCHs, τ = 0.14 (P = 0.02), total provitamin A carotenoids intake in FCCHs, τ = 0.19 (P < 0.001), and with parent-reported total FV frequency score, τ = 0.16 (P = 0.04). ConclusionThe correlation coefficients in this study are comparable with results from a meta-analysis examining associations between FVC and SCS in 7–10-y-old children (r = 0.20). Thus, evidence suggests that RS offers a potentially valid, objective, and feasible method to assess preschool children’s total FVC in multiple settings, especially in conjunction with other dietary assessment tools.

Implementation strategies for large scale quality improvement initiatives in primary care settings: a qualitative assessment

Background and objectivesThe EvidenceNOW: Advancing Heart Health in Primary Care was designed to assist primary care practices in the US in implementing evidence-based practices in cardiovascular care and building capacity for quality improvement. EvidenceNOW, NCT03054090, was registered with ClinicalTrials.gov on 15/02/2017. The goals of this study were to gain a comprehensive understanding of perspectives from research participants and research team members on the value of implementation strategies and factors that influenced the EvidenceNOW initiative in Virginia.MethodsIn 2018, we conducted 25 focus groups with clinicians and staff at participating practices, including 80 physicians, advanced practice clinicians, practice managers and other practice staff. We also conducted face-to-face and telephone interviews with 22 research team members, including lead investigators, practice facilitators, physician expert consultants, and evaluators. We used the integrated-Promoting Action on Research Implementation in the Health Services (i-PARIHS) framework in our qualitative data analysis and organization of themes.ResultsImplementation strategies valued by both practice representatives and research team members included the kick-off event, on-site practice facilitation, and interaction with physician expert consultants. Remote practice facilitation and web-based tools were used less frequently. Contextual factors that influence quality improvement efforts include leadership support, access to resources, previous quality improvement experience, and practice ownership type (independent compared to health system owned). Many clinicians and staff were overwhelmed by day-to-day activities and experience initiative fatigue, which hindered their ability to fully participate in the EvidenceNOW initiative.ConclusionsThis study provides details on how the practice environment plays an essential role in the implementation of evidence-based practices in primary care. Future efforts to improve quality in primary care practices should consider the context and environment of individual practices, with targeted implementation strategies to meet the needs of independent and health system owned practices. Future efforts to improve quality in primary care practices require strategies to address initiative fatigue among clinicians and practice staff. External support for building capacity for quality improvement could help primary care practices implement and sustain evidence-based practices and improve quality of care.Trial registrationThis project was registered with ClinicalTrials.gov on 15/02/2017 and the identifier is NCT03054090.

Translating the lived experience of illicit drinkers into program guidance for cannabis substitution: Experiences from the Canadian Managed Alcohol Program Study

A small but growing body of research has suggested the potential for cannabis substitution to support Managed Alcohol Program (MAP) service users to reduce acute and chronic alcohol-related harms. In 2022, researchers from the Canadian Managed Alcohol Program Study (CMAPS) noted a dearth of accessible, alcohol-specific educational resources to support service users and program staff to implement cannabis substitution pilots at several MAP sites in Canada. In this essay, we draw on over 10-years of collaboration between CMAPS, and organizations of people with lived experience (the Eastside Illicit Drinkers Group for Education (EIDGE) and SOLID Victoria) to describe our experiences co-creating cannabis education resources where none existed to support MAP sites interested in beginning to provide cannabis to participants. The research team relied on the unique lived experiences and informal cannabis-related harm reduction strategies described by EIDGE and SOLID members to create cannabis education resources that were accurate and relevant to MAP sites. EIDGE was familiar with creating peer-oriented educational resources and convened meetings and focus groups to engage peers. CMAPS research team members created standard cannabis unit equivalencies to support program delivery, and clinical advisors ensured that the stated risks and benefits of cannabis substitution, as well as tapering guidance for withdrawal management, were safe and feasible. The collaboration ultimately produced tailored client-facing and provider-facing resources. Our experience demonstrates that the lived expertise of drinkers can play an integral role in creating alcohol harm reduction informational materials, specifically those related to cannabis substitution, when combined with data from rigorous, community-based programs of research like CMAPS. We close by listing additional considerations for cannabis substitution program design for MAP settings emerging from this process of collaboration between illicit drinkers, service providers, clinicians, and researchers for consideration by other programs.

Abstract 15475: Comparable Program Delivery Time: Home-Based versus Hospital-Based Cardiac Rehabilitation

Introduction: Home-based cardiac rehabilitation (CR) adds flexibility for patients for whom hospital-based CR may not be accessible. The ERA-NUDGE study is a pragmatic randomized study, conducted at an urban safety-net hospital, which evaluated adherence and clinical outcomes of home- versus hospital-based CR, with mobile phone messaging. The resource requirements associated with home-based CR interactions are not yet well established. We aimed to compare program delivery time between home-based and hospital-based CR programming. Methods: For one random week in each of 22 months, program delivery times were recorded by a research team member who shadowed hospital CR sessions and reviewed chart notes for home-based CR interactions. Among the sub-set of participants who had interactions during these weeks, we compared time spent on four types of interactions and seven educational topics. Results: Among 326 patients that completed the parent study, 157 patients had 415 visits during the microcosting weeks (mean of 3.8 visits per patient). Demographics shown in Table 1. Home-based patients accounted for 134 encounters (32%) during microcosting collection weeks. Six- and twelve-week follow-up visits were split between hospital- and home-based groups (53% and 47%, respectively) (Table 2). Conclusions: Despite documented benefits for patients from CR, access remains low. Home-based CR may present an appealing alternative for patients with difficulties around CR access, but CR program directors may be wary of added staffing requirements to deliver these alternatives. Our analysis suggests that home-based CR can be delivered to patients without increases in personnel time.

"With group antenatal care, pregnant women know they are not alone": The process evaluation of a group antenatal care intervention in Ghana.

An essential component to improving maternal and newborn outcomes is antenatal care. A trial of group antenatal care was implemented in Ghana where 7 health care facilities were randomized to be intervention sites and 7 control sites continued traditional antenatal care. Group antenatal care, where 10-14 women with similar due dates meet together for visits, includes traditional components such as risk assessment with increased opportunity for education and peer support. The study aim was to assess and report the process evaluation of the implementation of a group antenatal care intervention. Process evaluation data were collected alongside intervention data and included both quantitative and qualitative data sources. Midwives at the health facilities which were randomized as intervention sites completed tracking logs to measure feasibility of the intervention. Research team members traveled to intervention sites where they conducted structured observations and completed fidelity and learning methods checklists to determine adherence to the model of group antenatal care delivery. In addition, midwives facilitating group antenatal care meetings were interviewed and focus groups were conducted with women participating in group antenatal care. In the majority of cases, midwives facilitating group antenatal care completed all components of the meetings with fidelity, following best practices such as sitting with the group rather than standing. Across 7 intervention sites, 7 groups (622 pregnant women) were documented in the tracking logs and of these participants, the majority (74%) attended more than half of the meetings, with 32% attending all 8 group meetings. Three themes were identified in both the midwife interviews and focus groups with pregnant women: 1) information sharing, 2) sense of community, and 3) time management challenges. An additional theme emerged from the focus groups with the women: women who had already given birth noticed a disconnect between what they learned and treatment received during labor and birth. This process evaluation determined that group antenatal care can be implemented with fidelity in low and middle-income countries. Time management was the biggest challenge, however both midwives and pregnant women found the model of care not only acceptable, but preferable to traditional care. The knowledge shared and sense of community built during the meetings was a valuable addition to the individual model of antenatal care.

Financial Toxicity in the Spanish Speaking Population

Advances in therapy have significantly improved cancer survival outcomes but with a harmful patient consequence: financial toxicity. Financial toxicity consists of a patient's many economic burdens from cancer treatment, encompassing direct healthcare costs as well as additional devastating financial consequences, such as job loss and medical bankruptcy. With rising cancer treatment costs, financial toxicity has become a problem that is increasingly impactful in both cancer treatment and survivorship, amplifying disparities, negatively impacting quality of life, treatment adherence and survival. The long-term research goal that this study will contribute to is to develop culturally appropriate and effective patient navigation resources and psychosocial support resources for interventions to increase coping and resilience to financial toxicity in high-risk populations. This study will seek to generate the early data needed to help develop the content and method of delivering strategies, tailored for an underserved, Spanish-speaking Latino population. Eligibility Participant must be 18 years of age or older at the time of study participation, able to read and speak Spanish, have diagnosis of cancer within the past 2 years or be on active treatment for their cancer; all disease sites and all stages are eligible for enrollment. We will exclude patients unable to give consent. Methods This is a prospective observational study of cancer patients and survivors, with participants to be recruited from Scripps MD Anderson Cancer Center. Participating clinics will be screened in the electronic medical record for individuals who meet above eligibility criteria. At the time of clinic visits, eligible individuals will be approached. Individuals who express that they would like to participate in the survey study will receive the study packet with the consent statement and baseline survey questions. Study participants will also be invited to participate in the OPTIONAL patient navigation portion of the study. Participants who are not active on the MyScripps patient portal will be invited to join the patient navigation portion of the study. Those elect to participate will be provided a device if they do not have their own. Participants will be given a Greenphire Clincard on which they will receive a total of $75 in three installments. Research team members will enter the item responses into the REDCap database. They will undergo a follow-up survey during a range from 4 months to 9 months from the initial survey date. Those participating in the patient navigation portion of the study will be contacted by the navigator on a monthly basis through the electronic portal or telephone. Statistics We plan to enroll N= 80 Spanish-speaking patients in the survey study. For correlation testing, we hypothesize a moderate effect size (correlation = 0.32) for the association between the primary outcome measure, the baseline measure of self-efficacy (Hope State score) and the baseline financial toxicity score (Economic Strain and Resilience in Cancer). For feasibility testing of navigation participation, feasibility will be assessed through descriptive statistics. We hypothesize that it is feasible for 50% of invited patients to participate. When the sample size is 40, a two-sided 95% confidence interval for participant completion rate will extend 0.15 from the observed proportion for an expected proportion of 0.50. Analysis The primary outcome measure is financial toxicity, measured using the ENRICh instrument at baseline. The primary predictor is the baseline Hope State score. This modeled association is of primary interest in the analysis. We will conduct descriptive and univariate/multivariate analyses on this association of primary interest, including Chi-square test, t-test. Other univariate and multivariate analyses of associations between financial toxicity and other measures obtained from survey measures, as well as clinical, demographic, socioeconomic, and care delivery variables, considered descriptive and exploratory, will be performed. Accounting for multiple comparisons will be based on stepdown procedures and familywise error rate control; we plan to control this overall error rate using the Holm-Sidak adjustment, or procedure with equitable properties.

Financing community partnerships for health equity: Findings and insights from cross-sector professionals.

To enhance understanding of financial alignment challenges facing cross-sector partnerships (CSPs) pursuing health equity and offer insights to guide research and practice. We collected data through surveys and interviews with cross-sector professionals in 16 states, 2020-2021. We surveyed 51 CSP leaders and received 26 responses. Following administration of the surveys to CSP leaders, we also conducted interviews with cross-sector professionals. The data are analyzed descriptively, comparatively, and qualitatively using thematic analysis. For quantitative survey data, we compare partnership responses, differentiating perceived levels of alignment among partnerships certified by the Pathways Community HUB Institute (PCHI), partnerships interested in certification, and partnerships without connection to the PCHI® Model of care coordination. For interviews, we engaged CSP professionals and those who fund their work. Two research team members took notes for interviews, which were combined and made available for review by those interviewed. Data were analyzed independently by two team members who met to integrate, identify, and finalize thematic findings. Our work supports previous findings that financing is a challenge for CSPs, while also suggesting that PCHI-certified partnerships may perceive greater progress in financial alignment than others. We identify four major financial barriers: limited and competitive funding; state health service delivery structures; cultural and practice divides across healthcare, social service, and public health sectors; and needs for further evidence of cross-sector service impacts on client health and costs. We also offer a continuum of measures of financial sustainability progress and identify key issues relating to financial incentivization/accountability. Findings suggest a need for public policy reviews and improvements to aid CSPs in addressing financial alignment challenges. We also offer a measurement framework and ideas to guide research and practice on financial alignment, based on empirical data.

First steps in qualitative secondary analysis: experiences of engaging with the primary research team

ABSTRACT Engaging with primary researchers during qualitative secondary analysis is a practice much recommended but rarely written about. In this article, I reflect on my experience of crossing an imagined boundary between the discrete textual dataset and its creators, of acknowledging and engaging with those researchers who invested in constructing the data, some of whom are still actively working with it. Focusing on four rationales for engaging with primary researchers - orientation, navigation, interpretation and the ethics of ownership - I describe the opportunities, tensions and dilemmas that presented themselves as I entered into dialogue with members of the primary research team. As the encouragement of rapid archiving practices and open qualitative research present new possibilities in working with contemporary ‘living’ archives, so it also raises new methodological and ethical considerations regarding engagement with and relationality towards primary researchers still active in their fields.

Promoting the integration of genetic counseling education and research across the spectrum of learners at a large academic institution.

Genetic counselors are valuable members of research teams and are increasingly taking leadership roles in major research trials. While the field of genetic counseling has explored a doctoral degree several times, the terminal degree is still a master's level. Genetic counseling training programs provide research training, but many genetic counselors desire additional opportunities to develop expertise. To address the gaps in the availability of research training before and after obtaining genetic counseling degrees, we applied for and received a grant centered around three aims: (1) develop an undergraduate minor in genomics and human health with a research component, (2) promote a rigorous genetic counseling research program for training to practice genetic counselors, and (3) initiate a combined PhD program in Molecular, Cellular, Developmental Biology, and Genetics (MCDB&G) with a track in genetic counseling. We describe each of these components and early progress toward these aims. As each individual aim is bearing fruit, the next challenges are implementing more crossover between people in each aim and distilling the lessons learned to see if this program could be replicated at other sites.

Building a Trauma-Informed Community: Applying Community Building Circles to an Academic Health Research Setting.

Within health science disciplines, power dynamics exist that can not only perpetuate harm but also foster feelings of powerlessness and disengagement. Although diversity, equity, and inclusion approaches have been prioritized by many institutions to improve student and staff recruitment, few effective structures exist to promote the retention, support, and inclusion of these individuals. Restorative justice circles facilitate a collaborative and personal exercise that welcomes the input of all members, thus acting as a catalyst toward broader and more deeply rooted culture changes and conflict resolution. Restorative justice circles can be applied to strengthen academic learning environments by building community and creating intentional dialog spaces to promote accountability and belonging. The Phoenix Gender-based Violence Lab is an interdisciplinary health research lab composed of diverse researchers who meet monthly for a restorative justice-inspired community-building circle and discussion. The lab members participated in community-building circles from August 2021 to August 2022 during which circle facilitators aimed to prioritize safety, trustworthiness, and transparency and provide collaboration opportunities. All 10 research team members consented to an anonymous evaluation survey to share their perspectives about incorporating this approach into lab time. Research team members expressed many benefits of circle discussions, including mitigated power dynamics (n = 5), increased lab cohesion (n = 9), improved research processes (n = 6), and enhanced honesty and accountability (n = 4). Circle practice has shown promising results within the Phoenix Gender-based Violence Lab, indicating that other academic and medical settings should consider its potential to enhance group dynamics, foster accountability, and cultivate deeper collaboration and appreciation among group members. Further investigation of circle practice in diverse medical and academic settings is needed to fully comprehend the range of outcomes resulting from this intervention and whether they align with the fundamental principles of restorative justice.

Current evidence on the association of tongue strength with cognitive decline in older adults and the known risk factors of frailty, sarcopenia and nutritional health: a scoping review protocol

IntroductionEvidence suggests that the pathology underlying cognitive decline leading to dementia begins 15–20 years before cognitive symptoms emerge. Thus, identifying biomarkers in this preclinical phase is critically important. Age-related decrease...

Athletic Trainers’ Perceptions of and Experiences With Unlearning in Clinical and Educational Practice

Context Unlearning is a critical component of evidence-based practice, yet research related to its role in athletic training practice is limited. Objective To explore athletic trainers’ (ATs’) perceptions of and experiences with unlearning. Design Cross-sectional. Setting Online survey with open-ended questions. Patients or Other Participants Seven hundred fifteen of 6925 ATs accessed the survey (access rate = 10.3%) with 640 ATs completing it (completion rate = 94%). Main Outcome Measure(s) We distributed a survey consisting of 8 to 10 demographic questions, 1 Likert-scale item on familiarity with unlearning, and 4 to 5 open-ended questions. Descriptive statistics summarize demographic information. Open-ended data were analyzed using the consensual qualitative research approach. Respondents who self-reported familiarity with unlearning were asked to described its meaning. To ensure data quality, these responses were compared with definitions of unlearning by 2 research team members. If consensus was reached that a participant’s understanding of unlearning aligned with the definitions, the remaining responses from that participant were included in the qualitative data analyses reported in this manuscript. Results Most respondents were minimally or not at all familiar with unlearning (n = 505/652, 77%). Approximately 46% (n = 181/391; 120 clinicians, 61 educators) accurately described the meaning of unlearning. Analysis of open-ended responses yielded 2 themes: barriers to unlearning and facilitators of unlearning. Reported barriers were intrinsic and extrinsic in nature and involved key stakeholders that frequently interact with ATs. Facilitators of unlearning included continued education, mentorship and team mindset, resources and evidence, and stakeholder education. Conclusions Respondents were largely unfamiliar with unlearning despite its role in promoting evidence-based practice. Continued education for ATs and relevant stakeholders is needed and may be accomplished through the creation and dissemination of accessible resources that highlight knowledge and skills that should be unlearned. These educational efforts may help to normalize unlearning in athletic training practice to continually improve the delivery of patient care.

Evaluating the Acceptability and Appropriateness of the Augmented Reality Home Assessment Tool (ARHAT): Qualitative Descriptive Study.

The Augmented Reality Home Assessment Tool (ARHAT) is a mobile app developed to provide rapid, highly accurate assessments of the home environment. It uses 3D-capture technologies to help people identify and address functional limitations and environmental barriers. This study was conducted to gain stakeholder feedback on the acceptability and appropriateness of the ARHAT for identifying and addressing barriers within home environments. A qualitative descriptive study was conducted because it allows for variability when obtaining data and seeks to understand stakeholders' insights on an understudied phenomenon. Each stakeholder group (occupational therapists, housing professionals, and aging adult and caregiver "dyads") participated in a 60-minute, web-based focus group via a secure Zoom platform. Focus group data were analyzed by 2 trained qualitative research team members using a framework method for analysis. A total of 19 stakeholders, aged from 18 to 85+ years, were included in the study. Of the occupational therapists (n=5, 26%), housing professionals (n=3, 16%), and dyads (n=11, 58%), a total of 32% (n=6) were male and 68% (n=13) were female, with most living in the Midwestern United States (n=10, 53%). The focus group data demonstrate the acceptability and appropriateness of the workflow, style, measurement tools, and impact of the ARHAT. All stakeholders stated that they could see the ARHAT being used at many different levels and by any population. Dyads specifically mentioned that the ARHAT would allow them to do forward planning and made them think of home modifications in a new light. Stakeholders found the ARHAT to be acceptable and appropriate for identifying and addressing functional limitations and barriers in the home environment. This study highlights the importance of considering the workflow, style, measurement tools, and potential impact of home assessment technology early in the developmental process.

30 Promoting Child and Youth Rights Literacy and the United Nations’ Convention on the Rights of the Child (UNCRC) for Equity-deserving Populations: A Multi-Partner, Mixed Methods Pilot Study

Abstract Background The UNCRC outlines the rights of children and youth to develop their greatest potential. These rights provide a framework for a child-centred approach in paediatric clinical practice and are associated with improved patient outcomes and experiences. While these rights are increasingly acknowledged globally, more work is needed within clinical settings to adopt this rights-based approach. A pilot survey was developed in partnership with an equity-deserving urban youth recreation centre and youth with chronic health conditions from a provincial paediatric tertiary care teaching hospital’s Youth Advisory Committee (YAC) regarding their knowledge of, and access to, the UNCRC. Objectives 1) To identify urban community youth knowledge of, and access to, UNCRC; 2) To identify and compare YAC knowledge of, and access to, UNCRC. Design/Methods Ethics approval was obtained. A survey developed to facilitate UNCRC discussions was presented to the urban community youth, iteratively from 2020 to 2021. Participants were recruited using convenience snowball sampling. Zoom dialogues between the research team and YAC members were held to adapt the survey to YAC context. The survey was completed by YAC members on Qualtrics from May to August 2022. Demographic information and survey results were analyzed using descriptive statistics. Results 57 participants completed the survey, including 18 youth, 16 caregivers, and 11 staff members from the community, and 11 youth and 1 staff member from YAC. The median ages of urban and YAC youth were 16.4 years and 23 years respectively. Prior to the study, 70% of youth participants did not know, or only sort of knew that the UNCRC existed. Both urban youth and YAC reported that children aged 0 to10 and 11 to 14 have the most access to article 31 (rest and play). However, urban youth reported that 15 to24-year-olds have the most access to article 24 (health and health services), whereas YAC reported article 12 (respect for children’s views) for this age group. Both youth groups reported that children and youth of all ages have the least access to articles 28 and 29 (education), article 12 (respect for children’s views), and article 23 (support for children with disabilities). Conclusion A lack of knowledge of the UNCRC was prevalent in youth from both an urban community and tertiary care hospital, indicating a need for increased dialogue among this community, clinicians, and the healthcare system. These results will also inform patient advocacy communities on gaps in knowledge and access to empower advocacy around child rights.

230 Inter-rater reliability assessment of OPTI-3S (criteria for optimising medicines by stopping, stepping down, or switching to safer alternatives)

Abstract Background The OPTI-3S criteria comprise newly developed consensus-based statements identifying potentially inappropriate medications for hospitalised frail older adults. This study assessed the inter-rater reliability of the OPTI-3S core list. Methods Data were collated from ten patient cases in the publicly archived ‘The Irish Longitudinal Study on Ageing’ (TILDA) dataset (Wave 3). Five healthcare professionals assessed medication appropriateness across the cases according to the OPTI-3S statements, indicating the applicable statement(s). Their assessments were compared against a ‘Gold Standard (GS) assessment’ consisting of a combined assessment of a research team member and a clinically experienced academic researcher, who independently assessed the medications’ appropriateness. Concordance between the GS rating and other raters was assessed by kappa statistics. Major discrepancies were identified when a rater applied a statement &amp;gt;2 times more or less frequently than GS [1]. Results The ten patients’ median age was 74 (Interquartile Range: 70–80) years, and 40% were female. The median (IQR) number of medications was 10 (9–12). Cohen’s kappa coefficient ranged from 0.65 to 0.86, indicating substantial to perfect interrater reliability when agreement was measured between the GS rating and any other rater. The overall mean (95% CI) Fleiss kappa coefficient between all raters was 0.67 (0.65,0.69), indicating substantial interrater reliability. The mean Fleiss kappa coefficient (95% CI) between the GS rating and geriatricians was 0.63 (0.60, 0.67). A good Fleiss kappa coefficient of 0.81 (0.75, 0.86) was found between the GS rating and pharmacists. Major discrepancies in applying seven statements were noted between the GS rating and three raters. Three of these statements were misinterpreted, indicating revised wording is needed. Conclusion The OPTI-3S core list shows substantial inter-rater reliability between experts with no previous experience using it. However, further testing with a larger number of clinical cases and raters is required.

Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration.

Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems. We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps. Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers. The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN. The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.

P09.03.A DEVELOPMENT OF A CORE OUTCOME SET FOR USE IN ADULT PRIMARY GLIOMA PHASE III INTERVENTIONAL TRIALS - A MIXED METHODS STUDY

Abstract BACKGROUND Glioma patients’ high symptom burden and the poor prognosis of high grade glioma has emphasised quality of survival and overall health-related quality of life (HRQOL) throughout the disease trajectory in clinical trials. Patient-reported outcomes (PROs) allow insight into how investigative treatment affects patients’ perceived functioning, complementing other outcome data (e.g. survival, radiological response) in clinical decision-making. Creating robust evidence requires effective data synthesis and meta-analyses across trials, underpinned by consistent trial outcome measurement, analysis and reporting. However, a standard ontology is lacking in cancer clinical trials, and brain tumours specifically, and selective outcome reporting is common. Core outcome set (COS) development is one means to improve data synthesis. The COBra project aimed to develop a COS for use in glioma phase III trials in support of those goals. Given stakeholder interest in PROs and prioritising the patient perspective, we also undertook initial exploration of which items could be patient reportable. MATERIAL AND METHODS A COS for adult primary glioma phase III interventional trials was developed through: (1) trial registry review and systematic review of qualitative studies; (2) interviews with glioma patients and caregivers; (3) outcome list de-duplication; (4) two-round Delphi process and outcome list rating; (5) a consensus meeting to finalise the COS. Patient-reportable COS outcomes were identified by cross-referencing the final COS outcomes with outcomes and PRO measures (PROMs) reported in the trial registry review. Activities were guided by UK Patient and Public Involvement standards and public contributors were core research team members. RESULTS A COS consisting of 19 outcomes grouped into seven outcome domains (Survival, Adverse Events, Activities of Daily Living, HRQOL, Seizure Activity, Cognitive Function and Physical Function) was finalised for use in glioma trials using this structured approach. Mapping PROMs identified in the registry review suggests that sub-domains of 6/7 outcome domains in the final COS can be patient-reported (adverse events, activities of daily living, HRQOL, seizure activity, neurocognitive function, physical function). Other currently unidentified instruments may also be suitable. Further research will identify appropriate measurement tools, promote accessible PRO delivery, and validate this COS for wider use. CONCLUSION A COS for glioma trials was developed, comprising seven outcome domains. Development of this COS coincides with growing regulatory interest in patient-reported data. To optimise data synthesis and prioritise the patient perspective, opportunities to collect data in this way should be promoted and taken. As such, this COS could be considered for use in registrational trials after further validation.

Poster (Clinical/Best Practice Implementation) ID 1985364

Background/objectives The engagement of people with lived experience (PLEX) of spinal cord injury/disease (SCI/D) in rehabilitation research can lead to relevant questions and improved data collection, interpretation, knowledge translation, and research impact. We describe the process to create a toolkit which elaborates the roles that PLEX can play in rehabilitation research to ensure engagement is authentic and effective. Methods Five separate working groups were convened to each focus on a specific role of PLEX: research team member, peer reviewer, knowledge translator, decision-maker, and fundraising ambassador. The roles of PLEX in research, relevant training tools, and indicators to measure engagement were explored through 17 virtual meetings with 45 scientists, research staff, learners, and PLEX. Menti-meter and Survey Monkey were used to select training tools via consensus. A summative meeting was held with all participants to achieve consensus regarding the role descriptions. Meeting transcripts and survey data informed iterations of the materials prior to achieving consensus. Findings The Toolkit contains five role descriptions for PLEX as well as example activities, training requirements for scientists and PLEX, and specific indicators for each role. The Toolkit includes several best practice considerations and three practical tools for researchers to plan engagement, facilitate compensation, and implement/evaluate engagement. Conclusions The Toolkit can be used by researchers and research organizations to develop, implement, and evaluate engagement plans with PLEX in SCI/D rehabilitation research. This Toolkit can be used to transform the SCI/D rehabilitation research and advocacy agenda, and contribute to more relevant research with a greater impact.

Effectiveness of a smartphone-enabled dyadic self-care programme (SDSCP) for stroke survivors and caregivers: study protocol for a randomised controlled trial

IntroductionThe promotion of self-care has begun to serve as a central response strategy to the rising burden of stroke. In fact, stroke self-care can be recognised to be a dyad...