Trivalent and quadrivalent seasonal influenza vaccine in adults aged 60 and older: a systematic review and network meta-analysis.

OBJECTIVES: To compare the efficacy of influenza vaccines of any valency for adults 60 years and older. DESIGN AND SETTING: Systematic review with network meta-analysis (NMA) of randomised controlled trials (RCTs). MEDLINE, EMBASE, JBI Evidence-Based Practice (EBP) Database, PsycINFO, and Cochrane Evidence -Based Medicine database were searched from inception to 20 June 20, 2022. Two reviewers screened, abstracted, and appraised articles (Cochrane Risk of Bias (ROB) 2.0 tool) independently. We assessed certainty of findings using Confidence in Network Meta-Analysis and Grading of Recommendations, Assessment, Development and Evaluations approaches. We performed random-effects meta-analysis and network meta-analysis (NMA), and estimated odds ratios (ORs) for dichotomous outcomes and incidence rate ratios (IRRs) for count outcomes along with their corresponding 95% confidence intervals (CIs) and prediction intervals. PARTICIPANTS: Older adults (≥60 years old) receiving an influenza vaccine licensed in Canada or the USA (vs placebo, no vaccine, or any other licensed vaccine), at any dose. MAIN OUTCOME MEASURES: Laboratory-confirmed influenza (LCI) and influenza-like illness (ILI). Secondary outcomes were the number of vascular adverse events, hospitalisation for acute respiratory infection (ARI) and ILI, inpatient hospitalisation, emergency room (ER) visit for ILI, outpatient visit, and mortality, among others. RESULTS: We included 41 RCTs and 15 companion reports comprising 8 vaccine types and 206 032 participants. Vaccines may prevent LCI compared with placebo, with high-dose trivalent inactivated influenza vaccine (IIV3-HD) (NMA: 9 RCTs, 52 202 participants, OR 0.23, 95% confidence interval (CI) (0.11 to 0.51), low certainty of evidence) and recombinant influenza vaccine (RIV) (OR 0.25, 95%CI (0.08 to 0.73), low certainty of evidence) among the most efficacious vaccines. Standard dose trivalent IIV3 (IIV3-SD) may prevent ILI compared with placebo, but the result was imprecise (meta-analysis: 2 RCTs, 854 participants, OR 0.39, 95%CI (0.15 to 1.02), low certainty of evidence). Any HD was associated with prevention of ILI compared with placebo (NMA: 9 RCTs, 65 658 participants, OR 0.38, 95%CI (0.15 to 0.93)). Adjuvanted quadrivalent IIV (IIV4-Adj) may be associated with the least vascular adverse events, but the results were very uncertain (NMA: eight 8 RCTs, 57 677 participants, IRR 0.18, 95%CI (0.07 to 0.43), very low certainty of evidence). RIV on all-cause mortality may be comparable to placebo (NMA: 20 RCTs, 140 577 participants, OR 1.01, 95%CI (0.23 to 4.49), low certainty of evidence). CONCLUSIONS: This systematic review demonstrated efficacy associated with IIV3-HD and RIV vaccines in protecting older persons against LCI. RIV vaccine may reduce all-cause mortality when compared with other vaccines, but the evidence is uncertain. Differences in efficacy between influenza vaccines remain uncertain with very low to moderate certainty of evidence. PROSPERO REGISTRATION NUMBER: CRD42020177357.

Rheumatoid Arthritis Care Experiences of Black People Living in Canada: A Qualitative Study to Inform Health Service Improvements.

OBJECTIVE: To understand experiences related to rheumatoid arthritis (RA) care and propose service-level strategies to reduce and mitigate inequities for Black people living in Canada. METHODS: Purposive and respondent driven sampling was used to recruit participants for qualitative interviews to explore population factors relevant to RA care and challenges and facilitators for access to health care services, medications, and enacting preferred treatment plans. Thematic analysis was conducted using the Braun and Clarke method with inductive and deductive coding and critical race theory guiding analysis. RESULTS: Six women and two men with RA, and two women health care professionals, expressed how their racial identity contributed to their understanding of RA, preferences for treatment, and outcome goals. Health care access was influenced by financial limitations and racism, by exclusion, and discrimination, and also by cultural norms in seeking health care and awareness about RA within the Black community. Participants experienced health system fragmentation and were not connected to ancillary supports. Treatment decision-making was influenced by the legacy of oppression and medical experimentation on Black people and the predominance of biomedical approaches emphasized by health care providers. Holistic and cultural approaches, provided in safe, trauma-informed care environments, with flexibility in service models, are desired. Partnerships between arthritis care services and Black community organizations are proposed to promote community awareness and knowledge about arthritis and provide support mechanisms for patients within their community. CONCLUSION: Our study highlights unique considerations based on race and ethnicity and provides suggestions for arthritis care to mitigate inequities for Black people living with arthritis.

Decision-Making Around COVID-19 Public Health Measures and Implications for Self-Care Activities: Experiences of Persons With Rheumatoid Arthritis.

OBJECTIVE: We aimed to advance understanding of how persons with rheumatoid arthritis (RA) experience decision-making about adopting public health measures during the COVID-19 pandemic. METHODS: Persons living with RA partnered throughout this nested qualitative study. One-to-one semistructured telephone interviews were conducted with participants with RA between December 2020 and December 2021. They were strategically sampled from a randomized controlled trial that was underway to test a physical activity counseling intervention. Analysis was guided by reflexive thematic analysis. RESULTS: Thirty-nine participants (aged 26-86 years; 36 women) in British Columbia, Canada were interviewed. We developed three themes. Participants described how their decision-making about public health measures related to 1) "upholding moral values of togetherness" because decisions were intertwined with moral values of neighborliness and reciprocity. Some adapted their self-care routines to uphold these moral values; 2) "relational autonomy-supports and challenges," because they sometimes felt supported and undermined in different relational settings (eg, by family, local community, or provincial government); and 3) "differing trust in information sources," in which decisions were shaped by the degree of faith they had in various information sources, including their rheumatologists. CONCLUSION: Across themes, experiences of decision-making about public health measures during the pandemic were embedded with moral concepts of solidarity, autonomy, and trust, with implications for how persons with RA chose and sustained their self-care activities. Insights gained help sensitize researchers and clinicians to moral issues experienced by persons with RA, which may inform support for self-care activities during and after the pandemic.

Effect of digital monitoring and counselling on self-management ability in patients with rheumatoid arthritis: a randomised controlled trial.

OBJECTIVES: To assess a remote physiotherapist (PT) counselling intervention using self-monitoring tools for improving self-management ability, physical activity participation, and health outcomes in people with rheumatoid arthritis (RA). METHODS: Eligible participants were randomly assigned to receive group education, a Fitbit®, a self-monitoring app, and PT counselling phone calls (Immediate Group). The Delayed Group received a monthly e-newsletter until week 26, and then the intervention. The primary outcome was Patient Activation Measure (PAM-13). Participants were assessed at baseline, 27 weeks (the primary end point) and 53 weeks. Secondary outcomes included disease activity, pain, fatigue, depression, sitting/walking habits, daily physical activity time, and daily awake sedentary time. Generalized Linear Mixed-effect Models (GLMMs) were used to assess the effect of the intervention on the change of each outcome measure from the initiation to 27 weeks after the intervention. RESULTS: Analysis included 131 participants (91.6% women; 80.2% completed during the COVID-19 pandemic). The mean change of PAM-13 at 27 weeks was 4.6 (SD = 14.7) in the Immediate Group vs -1.6 (SD = 12.5) in the Delayed Group. The mean change in Delayed Group at 53 weeks (after the 26-week intervention) was 3.6 (SD = 14.6). Overall, the intervention improved PAM-13 at 27 weeks post-intervention from the GLMM analysis (adjusted coefficient: 5.3; 95% CI: 2.0, 8.7; p = <0.001). Favourable intervention effects were also found in disease activity, fatigue, depression, and self-reported walking habit. CONCLUSION: Remote counselling paired with self-monitoring tools improved self-management ability in people with RA. Findings of secondary outcomes indicate that the intervention had a positive effect on symptom management.

Researcher-patient partnership generated actionable recommendations, using quantitative evaluation and deliberative dialogue, to improve meaningful engagement.

OBJECTIVES: To demonstrate how the 22-item Patient Engagement in Research Scale (PEIRS-22) can be used to develop recommendations for improving the meaningfulness of patient engagement. STUDY DESIGN AND SETTING: PEIRS-22 previously captured quantitative evaluation data from 15 patient partners in a self-study of the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. Guided by deliberative dialogue, the current study involved 3 steps: (1) In-depth analysis and interpretation of the PEIRS-22 data produced a lay evidence summary with identified areas for improvement of meaningful engagement; (2) A 3-hour virtual workshop with patient partners and researchers generated initial recommendations; and (3) In two successive post-workshop surveys, ratings by workshop invitees led to consensus on the recommendations. RESULTS: Twenty-five participants attended the workshops and dialogued on 8 areas for improvement identified from the PEIRS-22 data. Twenty-eight unique initial recommendations led to consensus on 14 key recommendations organized across 4 categories: setting expectations for all team members, building trust and ongoing communication, providing opportunities to enhance learning and to develop skills, and acknowledging contributions of patient partners. CONCLUSION: Using PEIRS-22 data within a deliberate dialogue elucidated 14 actionable recommendations to support ongoing improvement of patient engagement at SPOR Evidence Alliance, a pan-Canadian health research initiative.

The School of Hard Talks: A telehealth parent training group for caregivers of adolescents and young adults.

AIM: A large body of evidence demonstrates the importance of the family environment in the developmental trajectory of mental illness in young people. Caregiver communication skills training represents a potential model for influencing the outcomes of adolescents and young adults struggling with emerging mental health and behavioural difficulties. The aim of the current study is to describe the development of a telehealth group training intervention for caregivers of adolescents and young adults, and to report the results of a pilot feasibility-effectiveness study that took place in 2020-2021. METHODS: The "School of Hard Talks" intervention consisted of 8 h of training in communication skills consistent with motivational interviewing techniques. All pilot study participants were assigned to receive the intervention. Outcomes of interest were family conflict, caregiver stress, caregiver self-efficacy and expressed emotion (EE). Participants were assessed three times: prior to the intervention, after the intervention and 12 weeks later. RESULTS: A total of 62 participants enrolled in the study, of whom 49 completed the intervention. Large, significant improvements were observed over time in all four domains of interest. Qualitative feedback from parents was very positive and added context to quantitative observations. CONCLUSIONS: The School of Hard Talks was a feasible and effective intervention targeting both caregiver wellbeing as well as important mechanisms of risk for youth psychopathology, namely family conflict and EE. Further research involving a larger sample and a control condition are needed to confirm these findings.

Development and testing of the rheumatoid arthritis quality of care survey.

OBJECTIVES: The Rheumatoid Arthritis (RA) Quality of Care Survey (RAQCS) was developed to measure care quality according to a previously developed national RA quality improvement framework. METHODS: The development of the RAQCS occurred over 3 phases. First, the survey was developed by a team of healthcare providers, researchers, and two patient partners based on the existing national quality framework's 21 performance measures (PMs) and strategic objectives. Second, cognitive debriefing interviews were conducted with individuals living with RA to identify survey clarity, appropriateness of survey questions, and response options. Third, the survey was revised and distributed to participants recruited from Rheum4U (rheumatology longitudinal cohort). Results were tabulated and compared with a chart audit of participant medical records. RESULTS: Fifty-three participants completed the RAQCS. High performance (i.e., ≥70% meeting PM) was observed for 13 of 20 PMs. Lower performance was seen for the remaining PMs, which included documentation of body mass index (BMI) and smoking status, discussion of physical activity goals, comorbidity management including risk assessments for cardiovascular health and fragility fractures and disease activity assessment. There was high agreement (≥70%) between the RAQCS and chart review for 9 of 20 PMs. CONCLUSIONS: High agreement was observed between the RAQCS and chart review for selected PMs. The RAQCS may also be a valuable tool for quality improvement for measures where data are not usually available through other sources. Further testing of the RAQCS is needed to ascertain its reliability and validity as a patient self-reported tool to measure RA care quality.

The ParentingWell Practice Approach: Adaptation of Let's Talk About Children for Parents With Mental Illness in Adult Mental Health Services in the United States.

Background: Despite the importance of family and parent-focused practice, there has been a dearth of research on interventions for parents with mental illness. This paper describes the process and outcome of adapting an evidence-based intervention, Let's Talk about Children (LTC), in the context of adult mental health services in Massachusetts, United States. Methods: Specific objectives included: (1) to specify the core components, functions, and principles of LTC essential to adapting the intervention (i.e., program theory), (2) to consider contextual factors related to the new setting; (3) to pre-test the adapted materials with diverse practitioners; and (4) to compile the program model and materials (i.e., the practice profile) for use by adult mental health service providers in Massachusetts. The Adaptation Team included individuals with expertise in psychiatric rehabilitation and clinical care, policymaking, program development and research, and parents. Activities occurred between 2015-2019 and included: (1) consulting with experts to specify the core elements and theory behind the selected intervention (i.e., with the LTC purveyor and international experts); (2) consulting with key stakeholders for input regarding the Massachusetts target population and context to inform adaptations (i.e., individual and group key informant interview sessions); (3) pretesting the initial adapted materials (i.e., training and coaching sessions with adult mental health practitioners); and (4) using feedback to refine and compile the final intervention manual (i.e., the ParentingWell Practice Profile). Participants reflected diverse, oftentimes multiple roles and perspectives, including those of parents with mental illness, adult children, and family members. Results: ParentingWell is practitioner- and setting-agnostic, addresses parenting across the lifespan, fits into the routine workflow, and builds on practitioners' existing skills. Eight themes emerged, which were translated into four core elements (engage, explore, plan, access and advocate) consistent with Self-Determination Theory and four underlying principles (trauma-informed, strengths-based, family-focused, culturally sensitive) in keeping with the LTC model. The ParentingWell Practice Profile operationalizes each core element and addresses the underlying principles. Conclusion: ParentingWell makes talking about parenting and family experiences a routine part of the therapeutic conversation with adults with mental illness. Future research will test the adaptation, implementation, and impact of ParentingWell.

The ParentingWell Learning Collaborative Feasibility Study: Training Adult Mental Health Service Practitioners in a Family-Focused Practice Approach.

This study investigates the feasibility and impact of the ParentingWell Learning Collaborative (PWLC) model in supporting mental health practitioners in implementing the family-focused ParentingWell practice approach with adults with mental illness. An exploratory design and qualitative methods were employed. Practitioners (n = 29) participated in in-person orientation, training and debriefing sessions; virtual coaching sessions; and via an interactive online hub. Researchers obtained data on participant engagement and satisfaction, and participants' reports of use, helpfulness, intention to use and impact. Participants were engaged in and highly satisfied with the PWLC. They deployed PWLC skills, tools and resources with parents. Evidence of impact was provided at the personal, practice and organizational levels. This study provides preliminary support for the feasibility and impact of the PWLC. Clear specification of a theoretically-based training model for practitioners is an essential step in adapting, implementing and testing interventions in new contexts .

Experiences of self-care during the COVID-19 pandemic among individuals with rheumatoid arthritis: A qualitative study.

OBJECTIVES: This study aimed to explore the impact of the coronavirus disease 2019 (COVID-19) pandemic on self-care of individuals living with rheumatoid arthritis (RA). METHODS: Guided by a constructivist, qualitative design, we conducted one-to-one in-depth telephone interviews between March and October 2020 with participants with RA purposively sampled for maximum variation in age, sex and education, who were participating in one of two ongoing randomized-controlled trials. An inductive, reflexive thematic analysis approach was used. RESULTS: Twenty-six participants (aged 27-73 years; 23 females) in British Columbia, Canada were interviewed. We identified three themes: (1) Adapting to maintain self-care describes how participants took measures to continue self-care activities while preventing virus transmissions. While spending more time at home, some participants reported improved self-care. (2) Managing emotions describes resilience-building strategies such as keeping perspective, positive reframing and avoiding negative thoughts. Participants described both letting go and maintaining a sense of control to accommodate difficulties and emotional responses. (3) Changing communication with health professionals outlined positive experiences of remote consultations with health professionals, particularly if good relationships had been established prepandemic. CONCLUSION: The insights gained may inform clinicians and researchers on ways to support the self-care strategies of individuals with RA and other chronic illnesses during and after the COVID-19 pandemic. The findings reveal opportunities to further examine remote consultations to optimize patient engagement and care. PATIENT OR PUBLIC CONTRIBUTION: This project is jointly designed and conducted with patient partners in British Columbia, Canada. Patient partners across the United Kingdom also played in a key role in providing interpretations of themes during data analysis.

Manuscript: Defining Quality Standards for Intensive Home Based Treatment Programs for Youth with Serious Emotional Disorders.

Intensive Home Based Treatment (IHBT) is a critical component of the continuum of community-based behavioral healthcare for youth with serious emotional disorder (SED) and their families. Yet despite being used nationwide at costs of over $100 million annually in some states, a well-vetted, research-based set of quality standards for IHBT has yet to be developed. The current project aimed to define program and practice standards for IHBT, drawing upon literature review, expert interviews, and a systematic Delphi process engaging over 80 participants, including IHBT developers, experts in evidence-based youth mental health, youth and family advocates, IHBT providers, and state policymakers. After two rounds of quantitative and qualitative input, adequate consensus was achieved on 32 IHBT Program Standards and 43 IHBT Practice Standards. These standards hold potential for informing efforts such as development of state regulations, provider contracts, memoranda of agreement, and training and workforce development initiatives. Translation of the quality standards into measurement strategies holds potential for providing a method of continuous quality improvement across multiple levels as well as use in research on IBHT.

Motivational Interviewing for Loved Ones in Early Psychosis: Development and Pilot Feasibility Trial of a Brief Psychoeducational Intervention for Caregivers.

Treatment delay and non-adherence in first episode psychosis is a pressing public health problem. Ambivalence regarding psychiatric intervention and labeling among young people with psychosis is a contributing factor. For these individuals, caregivers often facilitate the pathway to care and support ongoing engagement and adherence. Caregivers describe distress and burden associated with this role. This manuscript describes the development and pilot feasibility testing of a motivational interviewing-derived communication training for caregivers of individuals with untreated or under-treated early course psychosis. Individuals with lived experience were consulted in the intervention development process. The training consisted of four 60-min sessions teaching the philosophy and basic skills of motivational interviewing as well as two brief practice calls. Feasibility was assessed with regard to study enrollment, retention, and completion. Satisfaction was assessed through the Client Satisfaction Questionnaire and qualitative feedback. Thirty-one caregivers consented to this pilot feasibility trial and participated via telehealth over the course of 5 months. Intervention completion and reported satisfaction were high, with 94% of consented participants completing at least three training sessions and 84% reporting that they would "definitely" recommend the training to a friend in similar circumstances. There were no between-clinician differences in MILO session attendance (F [2] = 0.53, p = 0.596) or satisfaction total scores (F [2] = 1.03, p = 0.371). Brief motivational interviewing skills training appears to be a feasible and valued intervention for caregivers of individuals with poorly managed early course psychosis. Clinical Trial Registration: ClinicalTrials.gov Identifier: NCT04010747.

Strategies for developing and implementing a rheumatoid arthritis healthcare quality framework: a thematic analysis of perspectives from arthritis stakeholders.

OBJECTIVES: To obtain stakeholder perspectives to inform the development and implementation of a rheumatoid arthritis (RA) healthcare quality measurement framework. DESIGN: Qualitative study using thematic analysis of focus groups and interviews. SETTING: Arthritis stakeholders from across Canada including healthcare providers, persons living with RA, clinic managers and policy leaders were recruited for the focus groups and interviews. PARTICIPANTS: Fifty-four stakeholders from nine provinces. INTERVENTIONS: Qualitative researchers led each focus group/interview using a semistructured guide; the digitally recorded data were transcribed verbatim. Two teams of two coders independently analysed the transcripts using thematic analysis. RESULTS: Perspectives on the use of different types of measurement frameworks in healthcare were obtained. In particular, stakeholders advocated for the use of existing healthcare frameworks over frameworks developed in the business world and adapted for healthcare. Persons living with RA were less familiar with specific measurement frameworks, however, they had used existing online public forums for rating their experience and quality of healthcare provided. They viewed a standardised framework as potentially useful for assisting with monitoring the care provided to them individually. Nine guiding principles for framework development and 13 measurement themes were identified. Perceived barriers identified included access to data and concerns about how measures in the framework were developed and used. Effective approaches to framework implementation included having sound knowledge translation strategies and involving stakeholders throughout the measurement development and reporting process. Clinical models of care and health policies conducive to outcome measurement were highlighted as drivers of successful measurement initiatives. CONCLUSION: These important perspectives will be used to inform a healthcare quality measurement framework for RA.

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement.

OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. METHODS: A prospective cross-sectional web-based survey in Canada and the USA, and also paper-based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. RESULTS: 119 participants: 99 from Canada, 74 female, 51 aged 17-35 years and 50 aged 36-65 years, 60 had post-secondary education, and 74 were Caucasian/white. The original 37-item PEIRS was shortened to 22 items (PEIRS-22), mainly because of low inter-item correlations. PEIRS-22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS-22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test-retest reliability (ICC2,1  = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS-22 scores across three levels of global meaningful engagement in research. CONCLUSIONS: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. PATIENT OR PUBLIC CONTRIBUTION: A researcher-initiated collaboration, patient partners contributed from study conception to manuscript write-up.

Development of a Patient-centered Quality Measurement Framework for Measuring, Monitoring, and Optimizing Rheumatoid Arthritis Care in Canada.

OBJECTIVE: The aim of this study was to develop a patient-centered quality measurement framework to address a predefined vision statement and 7 strategic objectives for rheumatoid arthritis (RA) care that was developed in prior qualitative work with arthritis stakeholders. METHODS: One hundred forty-seven RA-related performance measures (PMs) were identified from a systematic review. A candidate list of 26 PMs meeting predefined criteria and addressing the strategic objectives previously defined was then assessed during a 3-round (R) modified Delphi. Seventeen panelists with expertise in RA, quality measurement, and/or lived experience with RA rated each PM on a 1-9 scale based on the items of importance, feasibility, and priority for inclusion in the framework during R1 and R3, with a moderated discussion in R2. PMs with median scores ≥ 7 on all 3 items without disagreement were included in the final set, which then underwent public comment. RESULTS: Twenty-one measures were included in the final framework (15 PMs from the Delphi and 6 published system-level measures on access to care and treatment). The measures included 4 addressing early access to care and timely diagnosis, 12 evidence-based care for RA and related comorbidities, 1 addressing patient participation as an informed partner in care, and 4 on patient outcomes. CONCLUSION: The proposed framework builds upon existing measures capturing early access to care and treatment in RA and adds important PMs to promote high-quality RA care and outcome measurement. In the next phase, the authors will test the framework in clinical practice in addition to addressing certain areas where no suitable PMs were identified.

Priorities for High-quality Care in Rheumatoid Arthritis: Results of Patient, Health Professional, and Policy Maker Perspectives.

OBJECTIVE: To elucidate the essential elements of high-quality rheumatoid arthritis (RA) care in order to develop a vision statement and a set of strategic objectives for a national RA quality framework. METHODS: Focus groups and interviews were conducted by experienced qualitative researchers using a semistructured interview or focus group guide with healthcare professionals, patients, clinic managers, healthcare leaders, and policy makers to obtain their perspectives on elements essential to RA care. Purposive sampling provided representation of stakeholder types and regions. Recorded data was transcribed verbatim. Two teams of 2 coders independently analyzed the deidentified transcripts using thematic analysis. Strategic objectives and the vision statement were drafted based on the overarching themes from the qualitative analysis and finalized by a working group. RESULTS: A total of 54 stakeholders from 9 Canadian provinces participated in the project (3 focus groups and 19 interviews). Seven strategic objectives were derived from the qualitative analysis representing the following themes: (1) early access and timeliness of care; (2) evidence-informed, high-quality care for the ongoing management of RA and comorbidities; (3) availability of patient self-management tools and educational materials for shared decision making; (4) multidisciplinary care; (5) patient outcomes; (6) patient experience and satisfaction with care; and (7) equity, the last of which emerged as an overarching theme. The ultimate vision obtained was "ensuring patient-centered, high-quality care for people living with rheumatoid arthritis." CONCLUSION: The 7 strategic objectives that were identified highlight priorities for RA quality of care to be used in developing the National RA Quality Measurement Framework.

Implementation and Evaluation of Audit and Feedback for Monitoring Treat-to-Target (T2T) Strategies in Rheumatoid Arthritis Using Performance Measures.

INTRODUCTION: In collaboration with the Alberta Medical Association's Physician Learning Program we developed individualized physician reports and held a group feedback session on rheumatoid arthritis (RA) performance measures (PM) to facilitate treat-to-target (T2T) strategies and evaluated physician experiences with this process. METHODS: 5 PMs addressing T2T concepts from an established Canadian quality framework were operationalized for physician practice reports at 2 university-affiliated rheumatology clinics. Rheum4U, a quality improvement and research platform, was the data source. The audit results were reviewed in a facilitated group feedback session. Rheumatologists provided experiential feedback on the process through survey and/or an interview. Transcripts from interviews were analyzed using a 6-step thematic analysis. RESULTS: 11 of 12 eligible rheumatologists consented to receive practice reports and provided feedback through surveys (n = 5) and interviews (n = 6). The practice reports from Rheum4U (n = 448 patients) revealed high rates of yearly follow-up (> 85%, PM1) and 100% performance on documentation of disease activity at ≥ 50% of visits (PM2). Only 34% of patients were seen within 3 months if not in remission (PM3) with 62% (2017) and 69% (2018) of those with active RA achieving a LDA state within 6 months (PM4). Approximately 70% of patients were in remission at any time point (PM5). All survey respondents agreed or strongly agreed comparison to peers was valuable and helped them reflect on their practice. Several strategies for improvement were identified, including but not limited to, leveraging of electronic records for future audit and feedback reports, providing additional granularity of results, additional stratification of results, and using high-performing peers as the comparator rather than the group mean. CONCLUSIONS: Audit and feedback was perceived by clinicians as a useful strategy for evaluating T2T efforts in RA. Future work will focus on longitudinal evaluation of the clinical impact of this quality improvement initiative.

Efficacy of a Physical Activity Counseling Program With Use of a Wearable Tracker in People With Inflammatory Arthritis: A Randomized Controlled Trial.

OBJECTIVE: To assess the efficacy of a multifaceted counseling intervention at improving physical activity participation and patient outcomes. METHODS: We recruited people with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). In weeks 1-8, the immediate group received education and counseling by a physical therapist, used a Fitbit and a web application to obtain feedback about their physical activity, and received 4 follow-up calls from the physical therapist. The delay group received the same intervention in weeks 10-17. Participants were assessed at baseline and at weeks 9, 18, and 27. The primary outcome was time spent in moderate/vigorous physical activity (MVPA; in bouts of ≥10 minutes) measured with a SenseWear device. Secondary outcomes included step count, time in sedentary behavior, pain, fatigue, mood, self-management capacity, and habitual behaviors. RESULTS: A total of 118 participants enrolled. The adjusted mean difference in MVPA was 9.4 minutes/day (95% confidence interval [95% CI] -0.5, 19.3, P = 0.06). A significant effect was found in pain (-2.45 [95% CI -4.78, -0.13], P = 0.04), and perceived walking habit (0.54 [95% CI 0.08, 0.99], P = 0.02). The remaining secondary outcomes improved, but were not statistically significant. Post hoc analysis revealed a significant effect in MVPA (14.3 minutes/day [95% CI 2.3, 26.3]) and pain (-4.05 [95% CI -6.73, -1.36]) in participants with RA, but not in those with SLE. CONCLUSION: Counseling by a physical therapist has the potential to improve physical activity in people with inflammatory arthritis, but further study is needed to understand the intervention effect on different diseases. We found a significant improvement in pain, suggesting that the intervention might have a positive effect on symptom management.

Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

BACKGROUND: Little is known about Canadians' knowledge of and level of support for using administrative and other large, routinely collected data for health research, despite the benefits of this type of research to patients, health care systems and society. We sought to benchmark the views of Canadian adults on this topic. METHODS: Researchers and patient leaders of 3 joint and skin disease organizations codeveloped a cross-sectional online survey that was conducted between January and August 2017. The patient partners were engaged as full partners. Recruitment was mainly through the organizations' websites, email and social media. The survey captured respondents' initial perceptions, then (after background information on the topic was provided) elicited their views on the benefits of health research using routinely collected data, data access/privacy concerns, ongoing perceptions and educational needs. RESULTS: Of the 230 people who consented, 183 (79.6%) started the survey, and 151 (65.6%) completed the survey. Of the 151, 117 (77.5%) were women, 84 (55.6%) were British Columbians, 87 (57.6%) were university graduates, and 101 (66.9%) had a chronic disease. At the beginning of the survey, 119 respondents (78.8%) felt positively about the use of routinely collected data for health research. Respondents identified the ability to study long-term treatment effects and rare events (114 [75.5%]) and large numbers of people (110 [72.8%]) as key benefits. Deidentification of personal information was the top privacy measure (135 [89.4%]), and 101 respondents (66.9%) wanted to learn more about data stewards' granting access to data. On survey completion, more respondents (141 [93.4%]) felt positively about the use of routinely collected data, but only 87 (57.6%) were confident about data security and privacy. INTERPRETATION: Respondents generally supported the use of deidentified routinely collected data for health research. Although further investigation is needed with more representative samples, our findings suggest that additional education, especially about access and privacy controls, may enhance public support for research endeavours using these data.

Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective.

OBJECTIVES: To develop and examine the content and face validity of the Patient Engagement In Research Scale (PEIRS) for assessing the quality of patient engagement in research projects from a patient partner perspective. METHODS: Our team of researchers and patient partners conducted a mixed qualitative and quantitative study in three phases. Participants were English-speaking adult patients (including informal caregivers, family members, and friends) with varying experiences as partners in research projects in Canada. 1) Questionnaire items were generated following thematic analysis of in-depth interviews and published literature. 2) A three-round e-Delphi survey process via email correspondence was undertaken to refine and select the items for a provisional PEIRS. 3) Two rounds of cognitive interviewing elicited participants' understanding and opinions of each item and the structure of the PEIRS. RESULTS: One hundred and twenty items were generated from 18 interviews and organized across eight themes of meaningful engagement of patients in health research to form an initial questionnaire. The e-Delphi survey and cognitive interviewing each included 12 participants with a range of self-reported diseases, health-related conditions, and use of healthcare services. The e-Delphi survey yielded a 43-item provisional PEIRS. The PEIRS was then reduced to 37 items organized across seven themes after 1) refinement of problems in its instructions and items, and 2) the combining of two themes into one. CONCLUSIONS: We developed a 37-item self-reported questionnaire that has demonstrated preliminary content and face validity for assessing the quality of patient engagement in research.