Patient research partner engagement in OMERACT: Enhancing engagement through the implementation of patient engagement in research tools.

OBJECTIVES: This paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement. METHODS: Before the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session. RESULTS: The plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes. CONCLUSIONS: This paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research.

Quality improvement collaborative approach to COVID-19 pandemic preparedness in long-term care homes: a mixed-methods implementation study.

BACKGROUND: The devastating impact of the COVID-19 pandemic on long-term care (LTC) homes underscores the importance of effective pandemic preparedness and response. This mixed-methods, implementation science study investigated how a virtual-based quality improvement (QI) collaborative approach can improve uptake of pandemic-related promising practices and shared learning across six LTC homes in British Columbia, Canada in 2021 during the COVID-19 pandemic health emergency. METHODS: QI teams consisting of residents, family/informal caregivers, care providers and leadership in LTC homes are supported by QI facilitation and shared learning through virtual communication platforms. QI projects address gaps in outbreak preparation, prevention and response; planning for care; staffing; and family presence. Thematically analysed semi-structured qualitative interviews and a validated questionnaire on organisational readiness investigated participants' perceptions of challenges, success factors and benefits of participating in the virtual QI collaborative approach. RESULTS: Nine themes were identified through interview analysis, including two related to challenges (ie, making time for QI and hands tied by external forces), four regarding factors for successes (ie, team buy-in, working together as a team, bringing together diverse perspectives and facilitators keep us on track) and three on the benefits of the QI collaborative approach (ie, seeing improvements, staff empowerment and appetite for change). Continuous QI facilitation and coaching for QI teams was feasible and sustainable virtually via video conferencing (Zoom). The QI team members showed limited engagement on the virtual communication platform (Slack), which was predominantly used by the implementation science team and QI facilitators to coordinate the study and QI projects, respectively. CONCLUSIONS: The virtual-based QI collaborative approach to pandemic preparedness supported LTC homes to rapidly and successfully form multidisciplinary QI teams, learn about QI methods and conduct timely QI projects to implement promising practice for improved COVID-19 pandemic response.

Patient Engagement in Research Scale (PEIRS-22): Danish translation, applicability, and user experiences.

BACKGROUND: Patient and Public Involvement (PPI) in health research is gaining increased attention and acceptance worldwide. Reliable measurements are crucial to accurately assess, monitor, and evaluate patient involvement efforts in research. The Patient Engagement in Research Scale (PEIRS-22) measures meaningful patient and family caregiver engagement in research. This study focuses on three primary objectives: (1) translation of the PEIRS-22 from English to Danish, followed by linguistic validation and cultural adaptation; (2) assessing the applicability of the Danish PEIRS-22; and (3) focus group interviews to explore the user experiences of PPI. METHODS: A three-phase multi-method study was conducted. In phase one, the PEIRS-22 was translated, linguistically validated and culturally adapted to Danish. In phase two individuals from three distinct patient cancer advisory boards responded to the Danish version of PEIRS-22 to assess its applicability. Three focus group interviews were conducted in phase three, involving individuals from three patient cancer advisory boards. RESULTS: The translation process resulted in a Danish version of PEIRS-22, conceptually and culturally equivalent to the English version. Overall, among individuals of the three advisory boards (n = 15) the applicability was found to be satisfactory, with no missing data and all items completed. The total PEIRS-22 score among the three advisory boards was 85.2 out of a possible 100, with higher scores indicating greater meaningful involvement. A nested sample of the three patient cancer advisory boards (n = 9) participated in focus group interviews. The analysis yielded four themes: (1) The Danish PEIRS-22 captured the intended cultural meaning and contributed to self-reflection, (2) Internal motivation is a driver for involvement (3), Involvement brought a personal sense of empowerment and (4) Meaningful involvement collaborations are fostered by a trustful atmosphere. CONCLUSIONS: The PEIRS-22 questionnaire has been translated, linguistically validated, and culturally adapted into Danish. We propose that the PEIRS-22 is now ready for use in Danish populations. This study provides a Danish version of the questionnaire that can be used to develop patient-centred practices and foster meaningful involvement and collaborations between patients and researchers in the field of cancer research in Denmark. Personal benefits of participating in PPI can vary, and we recommend using PEIRS-22 in conjunction with a qualitative approach to better explore perspectives on meaningful involvement. TRIAL REGISTRATION: The study was registered prospectively on October 22, 2022, by the Danish Data Protection Agency (jr. nr. P-2022-528).

Patient and public involvement (PPI) in research can improve research practices by ensuring that patients' voices are heard. Individuals' lived experiences and unique viewpoints can contribute to refining research aims, ensuring they align with the needs and priorities of the target population. There is a growing interest in inviting patients into the research team as patient partners, for example, by establishing patient advisory boards. PPI can also involve caregivers and other stakeholders who are not usually thought of as members of the research team. For that reason, broadening our understanding of establishing meaningful PPI starts with measuring patient and family caregiver involvement. As such, the Patient Engagement In Research Scale (PEIRS-22) has been developed in the English language to measure meaningful patient and caregiver involvement. In this study, we aimed to (1) create a Danish version of the PEIRS-22 that respects any unique feature of Danish people, (2) assess the applicability of the Danish PEIRS-22, and (3) via focus-group interviews explore the user experiences of PPI. The patients and caregiver who were interviewed as part of the translation process expressed that the PEIRS-22 was easy to understand and captured the intended meanings. Fifteen other patient partners responded to the Danish version of PEIRS-22, and nine of them participated in the focus group interviews. One result was that creating a trusting and social atmosphere within the research group is important for promoting a personal sense of involvement.

Development of the Preferred Components for Co-Design in Research Guideline and Checklist: Protocol for a Scoping Review and a Modified Delphi Process.

BACKGROUND: There is increasing evidence that co-design can lead to more engaging, acceptable, relevant, feasible, and even effective interventions. However, no guidance is provided on the specific designs and associated methods or methodologies involved in the process. We propose the development of the Preferred Components for Co-design in Research (PRECISE) guideline to enhance the consistency, transparency, and quality of reporting co-design studies used to develop complex health interventions. OBJECTIVE: The aim is to develop the first iteration of the PRECISE guideline. The purpose of the PRECISE guideline is to improve the consistency, transparency, and quality of reporting on studies that use co-design to develop complex health interventions. METHODS: The aim will be achieved by addressing the following objectives: to review and synthesize the literature on the models, theories, and frameworks used in the co-design of complex health interventions to identify their common elements (components, values or principles, associated methods and methodologies, and outcomes); and by using the results of the scoping review, prioritize the co-design components, values or principles, associated methods and methodologies, and outcomes to be included in the PRECISE guideline. RESULTS: The project has been funded by the Canadian Institutes of Health Research. CONCLUSIONS: The collective results of this project will lead to a ready-to-implement PRECISE guideline that outlines a minimum set of items to include when reporting the co-design of complex health interventions. The PRECISE guideline will improve the consistency, transparency, and quality of reports of studies. Additionally, it will include guidance on how to enact or enable the values or principles of co-design for meaningful and collaborative solutions (interventions). PRECISE might also be used by peer reviewers and editors to improve the review of manuscripts involving co-design. Ultimately, the PRECISE guideline will facilitate more efficient use of new results about complex health intervention development and bring better returns on research investments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/50463.

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.

Evidence-Based Approaches to Mitigate Workplace Violence From Patients and Visitors in Emergency Departments: A Rapid Review.

INTRODUCTION: This is a rapid review of the published evidence on the effectiveness of interventions for mitigating workplace violence against staff in hospital emergency departments. Focused on the specific needs of an urban emergency department in Canada, this project sought to address the question, "What interventions have evidence regarding effectiveness for addressing workplace patient/visitor violence toward staff in the emergency department?" METHODS: Following Cochrane Rapid Review methods, 5 electronic databases (MEDLINE via PubMed, Cochrane CENTRAL, Embase, PsycINFO, CINAHL) and Google Scholar were searched in April 2022 for intervention studies to reduce or mitigate workplace violence against staff in hospital emergency departments. Critical appraisal was conducted using Joanna Briggs Institute tools. Key study findings were synthesized narratively. RESULTS: Twenty-four studies (21 individual studies, 3 reviews) were included in this rapid review. A variety of strategies for reducing and mitigating workplace violence were identified and categorized as single or multicomponent interventions. Although most studies reported positive outcomes on workplace violence, the articles offered limited descriptions of the interventions and/or lacked robust data to demonstrate effectiveness. Insights from across the studies offer knowledge users information to support the development of comprehensive strategies to reduce workplace violence. DISCUSSION: Despite a large body of literature on workplace violence, there is little guidance on effective strategies to mitigate workplace violence in emergency departments. Evidence suggests that multicomponent approaches targeting staff, patients/visitors, and the emergency department environment are essential to addressing and mitigating workplace violence. More research is needed that provides robust evidence on effective violence prevention interventions.

Better Together: Launching and Nurturing a Community Stakeholder Committee to Enhance Care and Research for Asthma and COPD.

Partnering with patients and community stakeholders to identify, design, undertake, and evaluate research is increasingly common. We describe our experience with creating and developing an ongoing Community Stakeholder Committee to guide lung health research for disease prevention and health care improvement. This committee is central to the integrated knowledge translation approach of Legacy for Airway Health, which is dedicated to preventing and improving care for lung diseases. Patient Engagement in Research (PEIR) aims to improve the relevance, quality, and implementation of research activities. Meaningful patient and community engagement in research remains challenging to enact. The committee was established in October 2019, just before the COVID-19 pandemic, and quickly adapted from in-person to virtual engagement activities. This change led to an increased focus on relationship-building and mutual support alongside other research and training activities. We conducted a baseline evaluation survey after 1 year (October 2020), using a modified version of the Patient Engagement in Research Scale (PEIRS-22). Whereas individual scores suggested varied levels of meaningful engagement within the committee, overall results indicated strong personal relationships and a sense of feeling valued and respected, as well as a desire for increased opportunities to contribute to research within the program. Overall, this experience offers lessons learned about the importance of spending time and effort to build relationships, particularly in a virtual context, and shows that meaningful engagement can be achieved even when personal contact is limited. These efforts are illustrated in successful grant applications, research involvement, and stronger personal relationships.

Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: a scoping review.

OBJECTIVE: To identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems. METHODS: We conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme. RESULTS: Of 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness. CONCLUSIONS: The 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.

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.

Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol.

INTRODUCTION: To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia's healthcare system. We will use those elements to develop a conceptual evaluation framework. METHODS AND ANALYSIS: This scoping review follows Arskey and O'Malley's methodology. (1) The research question was identified through team discussions. (2) Articles for data source will be identified using a librarian-informed search strategy for seven bibliographic databases as well as grey literature sources. (3) Selected articles will be relevant to the evaluation of patient and family caregiver engagement in healthcare systems. (4) Two researchers will independently extract data into predefined and emerging categories. (5) The researchers will reconcile and organise the identified elements. The research team's collective perspective will then refine the elements, and select, interpret and summarise the results. (6) Persons from key stakeholder groups will be consulted to refine the emergent conceptual framework. ETHICS AND DISSEMINATION: We will seek ethics approval for the stakeholder consultation. This study follows an integrated knowledge translation approach. The results will inform evaluation of the Patients as Partners Initiative of the British Columbia Ministry of Health, and will be disseminated as a scientific article, a research brief, and presentations at conferences and stakeholder meetings.

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.

Accuracy of Fitbit Devices: Systematic Review and Narrative Syntheses of Quantitative Data.

BACKGROUND: Although designed as a consumer product to help motivate individuals to be physically active, Fitbit activity trackers are becoming increasingly popular as measurement tools in physical activity and health promotion research and are also commonly used to inform health care decisions. OBJECTIVE: The objective of this review was to systematically evaluate and report measurement accuracy for Fitbit activity trackers in controlled and free-living settings. METHODS: We conducted electronic searches using PubMed, EMBASE, CINAHL, and SPORTDiscus databases with a supplementary Google Scholar search. We considered original research published in English comparing Fitbit versus a reference- or research-standard criterion in healthy adults and those living with any health condition or disability. We assessed risk of bias using a modification of the Consensus-Based Standards for the Selection of Health Status Measurement Instruments. We explored measurement accuracy for steps, energy expenditure, sleep, time in activity, and distance using group percentage differences as the common rubric for error comparisons. We conducted descriptive analyses for frequency of accuracy comparisons within a ±3% error in controlled and ±10% error in free-living settings and assessed for potential bias of over- or underestimation. We secondarily explored how variations in body placement, ambulation speed, or type of activity influenced accuracy. RESULTS: We included 67 studies. Consistent evidence indicated that Fitbit devices were likely to meet acceptable accuracy for step count approximately half the time, with a tendency to underestimate steps in controlled testing and overestimate steps in free-living settings. Findings also suggested a greater tendency to provide accurate measures for steps during normal or self-paced walking with torso placement, during jogging with wrist placement, and during slow or very slow walking with ankle placement in adults with no mobility limitations. Consistent evidence indicated that Fitbit devices were unlikely to provide accurate measures for energy expenditure in any testing condition. Evidence from a few studies also suggested that, compared with research-grade accelerometers, Fitbit devices may provide similar measures for time in bed and time sleeping, while likely markedly overestimating time spent in higher-intensity activities and underestimating distance during faster-paced ambulation. However, further accuracy studies are warranted. Our point estimations for mean or median percentage error gave equal weighting to all accuracy comparisons, possibly misrepresenting the true point estimate for measurement bias for some of the testing conditions we examined. CONCLUSIONS: Other than for measures of steps in adults with no limitations in mobility, discretion should be used when considering the use of Fitbit devices as an outcome measurement tool in research or to inform health care decisions, as there are seemingly a limited number of situations where the device is likely to provide accurate measurement.

What constitutes meaningful engagement for patients and families as partners on research teams?

Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.

An empirically based conceptual framework for fostering meaningful patient engagement in research.

BACKGROUND: Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. OBJECTIVE: To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. METHODS: We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team. RESULTS: Participants' experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team. CONCLUSIONS: The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient-researcher partnerships are led by researchers with little experience of engaging patients in research.

Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects.

PURPOSE OF REVIEW: The term "patient engagement in research" refers to patients and their surrogates undertaking roles in the research process beyond those of study participants. This paper proposes a new framework for describing patient engagement in research, based on analysis of 30 publications related to patient engagement. RECENT FINDINGS: Over the past 15 years, patients' perspectives have been instrumental in broadening the scope of rheumatology research and outcome measurement, such as evaluating fatigue in rheumatoid arthritis. Recent reviews, however, highlight low-quality reporting of patient engagement in research. Until we have more detailed information about patient engagement in rheumatology research, our understanding of how patients' perspectives are being integrated into research projects remains limited. When authors follow our guidance on the important components for describing patients' roles and function as "research partners," researchers and other knowledge users will better understand how patients' perspectives were integrated in their research projects.

Validated Measures of Illness Perception and Behavior in People with Knee Pain and Knee Osteoarthritis: A Scoping Review.

OBJECTIVE: To identify validated measures that capture illness perception and behavior and have been used to assess people who have knee pain/osteoarthritis. METHODS: A scoping review was performed. Nine electronic databases were searched for records from inception through April 19, 2015. Search terms included illness perception, illness behavior, knee, pain, osteoarthritis, and their related terms. This review included English language publications of primary data on people with knee pain/osteoarthritis who were assessed with validated measures capturing any of 4 components of illness perception and behavior: monitor body, define and interpret symptoms, take remedial action, and utilize sources of help. Seventy-one publications included relevant measures. Two reviewers independently coded and analyzed each relevant measure within the 4 components. RESULTS: Sixteen measures were identified that capture components of illness perception and behavior in the target population. These measures were originally developed to capture constructs that include coping strategies/skills/styles, illness belief, illness perception, self-efficacy, and pain behavior. Coding results indicated that 5, 11, 12, and 5 of these measures included the monitor body, define and interpret symptoms, take remedial action, and utilize sources of help components, respectively. CONCLUSIONS: Several validated measures were interpreted as capturing some components, and only 1 measure was interpreted as capturing all of the components of illness perception and behavior in the target population. A measure that comprehensively captures illness perception and behavior could be valuable for informing and evaluating therapy for patients along a continuum of symptomatic knee osteoarthritis.

Validation of the Questionnaire to Identify Knee Symptoms (QuIKS) using Rasch analysis.

BACKGROUND: The Questionnaire to Identify Knee Symptoms (QuIKS) was recently developed to promote activity by screening for experiences related to early symptoms in people with emergent chronic knee pain problems, such as osteoarthritis (OA) - like knee pain. The main purpose of the current study was to evaluate measurement properties of the QuIKS using Rasch analysis in a sample of people with knee symptoms consistent with symptomatic knee OA. METHOD: This study used cross-sectional data. The sample was 200 subjects along the following knee health continuum: pain-free healthy knees (n = 55) from a university community, knee pain with no knee OA diagnosis (n = 111) from a university-affiliated medical clinic, and patients with surgeon-diagnosed symptomatic knee OA awaiting high tibial osteotomy (n = 34) from a sports medicine surgical clinic. The 13-item QuIKS was evaluated for its factor structure, item- and person-fit, item's category response structure, differential item functioning by sex and obesity status, local item dependency, unidimensionality, and test precision. Subsequently, the QuIKS underwent known-groups analysis and convergent validity with the Knee injury and Osteoarthritis Outcome Score (KOOS). RESULTS: In the QuIKS, each item's category response structure was modified. No differential item functioning was observed. Local item dependency informed the formation of four testlets. This refined QuIKS obtained summary fit to the Rasch measurement model, unidimensionality, reliability (person separation index = 0.82), and interval-level scoring. Subsequently, the Rasch-validated QuIKS (QuIKS-R) demonstrated excellent known-groups validity and good convergent validity with the KOOS (Spearman's rho = 0.45 to 0.77). CONCLUSIONS: The QuIKS-R provides interval-level quantification of knee symptoms-related experiences in people with knee symptoms consistent with symptomatic knee OA. Its scores might be useful for clinicians for promoting activity in individuals with early symptoms consistent with symptomatic knee OA.