Patient engagement in the development and implementation of navigation services: a scoping review protocol.

INTRODUCTION: Patient navigation, a complex health intervention meant to address widespread fragmentation across the healthcare landscape, has been widely adopted internationally. This rapid uptake in patient navigation has led to a broadening of the service's reach to include those of different social positions and different health conditions. Despite the popularity and prevalence of patient navigation programmes, the extent of patient involvement and/or partnership in their construction has yet to be articulated. This scoping review will explore and describe the extent to which patients have been engaged in the development and/or implementation of patient navigation programmes to date. METHODS AND ANALYSIS: This scoping review will adhere to the Arksey and O'Malley framework for conducting scoping reviews. The electronic databases MEDLINE, CINAHL, EMBASE, PsycINFO, SocINDEX and Scopus were searched in September 2023 using terms related to patient navigation and programme implementation. Inclusion criteria stipulate that the studies must: (1) include an intervention labelled as 'navigation' in a healthcare setting and (2) describe patient engagement in the design, development and/or implementation process of said patient navigation programme. To assess study eligibility, two reviewers will independently read through the titles and abstracts, followed by the full texts, of each study identified from the search strategy to determine whether they meet inclusion criteria. Reviewers will then extract data from the included studies, present descriptive study characteristics in tables, and perform qualitative content analysis. ETHICS AND DISSEMINATION: This review does not require ethics approval as data will be collated exclusively from peer-reviewed articles and thesis dissertations. A manuscript summarising the results of the review will be written and submitted to a peer-reviewed journal for publication. The review will map aspects of programme development that have repeatedly utilised patient perspectives and areas where engagement has lagged. This review will also depict how patient engagement varies across programme characteristics.

Postdischarge opioid use after lumbar spine surgery among older adults in Ontario: a population-based cohort study.

BACKGROUND: Prescription opioid use places a considerable economic burden on health care systems. Older patients undergoing surgical procedures for painful conditions commonly receive opioids pre- and postoperatively, and are susceptible to adverse reactions. This study explores predictors of prolonged postoperative opioid use among older patients after lumbar spine surgery and the consequences in terms of health care utilization and costs. METHODS: We conducted a retrospective population-based cohort study using Ontario administrative data from older adults undergoing spine surgery between 2006 and 2017. Data were analyzed from 90 days preoperatively to 1 year after hospital discharge, with last postoperative opioid prescriptions stratified into 90-day increments. We used multivariable ordinal logistic regression to identify predictors of long-term opioid use and generalized linear modelling to examine resource utilization and health care costs (2021 Canadian dollars). RESULTS: Of 15 109 patients included, 40.8% received preoperative opioid prescriptions. Preoperative opioid use strongly predicted prolonged postoperative use (odds ratio [OR] 4.47, 95% confidence interval [CI] 4.16-4.79), with 48.3% of patients who received preoperative opioids continuing to use opioids for longer than 9 months, relative to 12.7% of those without preoperative use. Several other risk factors for prolonged use were identified. Patients receiving long-term postoperative opioids incurred greater health care costs relative to those with opioids prescribed for fewer than 90 days (OR 1.49, 95% CI 1.44-1.54). CONCLUSION: Among older adults undergoing spine surgery, preoperative opioid use was a strong predictor of prolonged postoperative use, which was associated with increased health care costs. These results form an important baseline for future studies evaluating strategies to reduce opioid use targeting older surgical populations.

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.

Uptake of pediatric patient-reported outcome and experience measures and challenges associated with their implementation in Alberta: a mixed-methods study.

BACKGROUND: Implementing Patient-reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) is an effective way to deliver patient- and family-centered care (PFCC). Although Alberta Health Services (AHS) is Canada's largest and fully integrated health system, PROMs and PREMs are yet to be routinely integrated into the pediatric healthcare system. This study addresses this gap by investigating the current uptake, barriers, and enablers for integrating PROMs and PREMs in Alberta's pediatric healthcare system. METHODS: Pediatric clinicians and academic researchers with experience using PROMs and PREMs were invited to complete a quantitative survey. Additionally, key stakeholders were qualitatively interviewed to understand current challenges in implementing pediatric PROMs and PREMs within AHS. Quantitative data gathered from 22 participants were descriptively analyzed, and qualitative data from 14 participants were thematically analyzed. RESULTS: Participants identified 33 PROMs and 6 PREMs showing diversity in the types of pediatric PROMs and PREMs currently being used in Alberta and their mode of administration. The qualitatively identified challenges were associated with patients, family caregivers, and clinicians. The absence of system-level support, such as integration within electronic medical records, is considered a significant system-level challenge. CONCLUSIONS: The significant variation in the types of PROMs and PREMs used, the rationale for their use, and their mode of administration demonstrate the diverse and sporadic use of these measures in Alberta. These findings highlight the need for province-wide uniform implementation of pediatric PROMs and PREMs in Alberta. Our results could benefit healthcare organizations in developing evidence-based PROM and PREM implementation strategies in pediatrics.

Factors affecting implementation of patient-reported outcome and experience measures in a pediatric health system.

BACKGROUND: The use of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in pediatric clinical practice can enhance clinical care and bring children and families' perspectives into evaluations of healthcare services. Implementing these measures is complex and requires a thorough assessment of the context of implementation The purpose of this study is to describe the barriers and facilitators to PROMs and PREMs implementation and to recommend strategies for implementing these measures in a pediatric health system. METHODS: We used a qualitative descriptive approach to analyse data from interviews to understand the experiences of PROMs and PREMs users across different pediatric settings in a single Canadian healthcare system. RESULTS: There were 23 participants representing a variety of roles within the healthcare system and pediatric populations. We found five main factors that affected implementation of PROMs and PREMs in pediatric settings: 1) Characteristics of PROMs and PREMs; 2) Individual's beliefs; 3) Administering PROMs and PREMs; 4) Designing clinical workflows; and 5) Incentives for using PROMs and PREMs. Thirteen recommendations for integrating PROMs and PREMs in pediatric health settings are provided. CONCLUSIONS: Implementing and sustaining the use of PROMs and PREMs in pediatric health settings presents several challenges. The information presented will be useful for individuals who are planning or evaluating the implementation of PROMs and PREMs in pediatric settings.

Youth engagement in mental health research: A systematic review.

INTRODUCTION: Patient engagement in youth mental health research has the potential to inform research on the interventions, services and policies that will benefit youth. At present, there is little evidence to guide mental health researchers on youth engagement. This systematic review aims to describe the impacts of youth engagement on mental health research and to summarize youth engagement in mental health research. METHODS: We searched the following databases: MEDLINE, EMBASE and PsycINFO, using a combination of subject headings, keywords and synonyms for the concepts 'patient engagement', 'youth' and 'mental health'. Articles that described engaging youth in mental health research were included. Two reviewers performed the study selection. Study characteristics, research activities performed by youth, impacts of youth engagement, challenges, and facilitators to engagement and recommendations for youth engagement described by authors were extracted. Quality appraisal involved determining the level of engagement of youth and the stage(s) of research where youth were involved. RESULTS: The database search returned 2836 citations, 151 full-text articles were screened and 16 articles, representing 14 studies, were selected for inclusion. Youth were involved at nearly all stages of the research cycle, in either advisory or co-production roles. Youth engagement impacts included enhancing relevant research findings, data collection and analysis and dissemination to academic and stakeholder audiences. Both youth and academic researchers reported personal development across many domains. One negative impact reported was the increase in funding and resources needed for engagement. We produced a list of 35 recommendations under the headings of training, youth researcher composition, strategy, expectations, relationships, meeting approaches and engagement conditions. CONCLUSIONS: This study provides an understanding of the impacts and recommendations of youth engagement in mental health research. The findings from this study may encourage researchers to engage youth in their mental health research and support youth engagement in funding applications. PATIENT AND PUBLIC CONTRIBUTION: We consulted three youths with experience being engaged in mental health research about the review findings and the discussion. One youth designed a visual representation of the results and provided feedback on the manuscript. All youth's input informed the way the findings were presented and the focus of the discussion.

Patient-reported outcome measures in pediatric asthma care: using theoretical domains framework to explore healthcare providers' perceptions.

BACKGROUND: Patient-reported outcome measures (PROMs) play an important role in promoting and supporting patient and family-centered care. Implementing interventions like PROMs in routine clinical care require key stakeholders to change their behavior. The aim of this study was to utilize the Theoretical Domains Framework (TDF) to identify barriers and enablers to the implementation of PROMs in pediatric outpatient asthma clinics from healthcare providers' perspective. METHODS: This TDF-guided qualitative descriptive study is part of a larger multi-phase project to develop the KidsPRO program, an electronic platform to administer, collect, and use PROMs in pediatrics. Semi-structured qualitative interviews were conducted with 17 participants, which included pediatricians, nurses, allied health professionals and administrative staff from outpatient asthma clinics. All the interviews were transcribed, deductively coded, inductively grouped in themes, and categorized into barriers and enablers. RESULTS: We identified 33 themes within 14 TDF domains, which were further categorized and tabulated into 16 barriers and 17 enablers to implementing PROMs in asthma clinics. Barriers to behavioral change were attributed to personal, clinical, non-clinical, and other system-level factors; they ranged from limited awareness of PROMs to language barriers and patient's complex family background. Enablers ranged from a personal commitment to providing patient and family-centered care to administering PROMs electronically. CONCLUSION: This implementation of science-based systematic inquiry captured the complexity of PROMs implementation in pediatric outpatient clinical care for asthma. Considering the consistency in barriers and enablers to implementing PROMs across patient populations and care settings, many findings of this study will be directly applicable to other pediatric healthcare settings.

Use of Patient-Reported Experience Measures in Pediatric Care: A Systematic Review.

Introduction: Patient-reported Experience Measures (PREMs) are validated questionnaires, that gather patients' and families' views of their experience receiving care and are commonly used to measure the quality of care, with the goal to make care more patient and family-centered. PREMs are increasingly being adopted in pediatric population, however knowledge gaps exist around understanding the use of PREMs in pediatrics. Objective: To identify and synthesize evidence on the use of PREMs in pediatric healthcare settings and their characteristics. Evidence Review: Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines governed the conduct and reporting of this review. An exhaustive search strategy was applied to MEDLINE, EMBASE, PsycINFO, Cochrane Library, and CINAHL databases to identify relevant peer-reviewed articles from high-income countries. Additionally, gray literature was searched to capture real-world implementation of PREMs. All the articles were screened independently by two reviewers in two steps. Data was extracted independently, synthesized, and tabulated. Findings from gray literature was synthesized and reported separately. Risk of bias for the studies identified through scientific databases was assessed independently by two reviewers using the National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Results: The initial search identified 15,457 articles. After removing duplicates, the title and abstracts of 11,543 articles were screened. Seven hundred ten articles were eligible for full-text review. Finally, 83 articles met the criteria and were included in the analyses. Of the 83 includes studies conducted in 14 countries, 48 were conducted in USA, 25 in European countries and 10 in other countries. These 83 studies reported on the use of 39 different PREMs in pediatric healthcare settings. The gray literature retrieved 10 additional PREMs. The number of items in these PREMs ranged from 7 to 89. Twenty-three PREMs were designed to be completed by proxy, 10 by either pediatric patients or family caregivers, and 6 by pediatric patients themselves. Conclusion and Relevance: This comprehensive review is the first to systematically search evidence around the use of PREMs in pediatrics. The findings of this review can guide health administrators and researchers to use appropriate PREMs to implement patient and family-centered care in pediatrics.