Measurement of illness perception and behaviour along a continuum of symptomatic knee osteoarthritis: a transdisciplinary approach

Objectives: A multifactorial approach is recommended for the identification/diagnosis, prognosis, and treatment of pain in knee osteoarthritis (OA). One aspect of this approach includes illness perception and behaviour. The purpose of this thesis was to investigate the measurement of illness perception and behaviour along a continuum of symptomatic knee OA, starting from the early symptoms of knee OA. Methods: Three studies were conducted to fulfill this purpose. The first study was a scoping review that applied an interpretative analysis to validated measures that had been used to assess people with knee pain and/or knee OA. Second was the construct validation of a measure of illness perception and behaviour in people with early symptoms of knee OA and confirmed knee OA. Third was a study of a rat model of post-traumatic knee OA that was undertaken to identify behavioural measures that were significantly different between rats with and without knee OA. Results: The scoping review identified 16 validated measures that capture components of illness perception and behaviour. Only one measure, the Questionnaire to Identify Knee Symptoms (QuIKS), capture all four components of illness perception and behaviour. In the second study, a version of the QuIKS called the QuIKS-R was found to be unidimensional and to provide interval-level scaling of illness perception and behaviour. In the third study, ipsilateral weight-bearing deficit and vertical activity limitations were identified as two behavioural measures that differed between the rat model of post-traumatic knee OA and control groups. Conclusions: The three studies in this thesis identified measures that could be important in advancing the identification and care of people with symptoms of knee OA, in terms of clinical care, clinical research with humans and preclinical research with the rat model of post-traumatic knee OA

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

Measures of Patient Activation and Self-Efficacy

Medicine, Faculty ofPhysical Therapy, Department ofReviewedFacultyPostdoctora

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

Additional file 1: of Validation of the Questionnaire to Identify Knee Symptoms (QuIKS) using Rasch analysis

Questionnaire to Identify Knee Symptoms-R (QuIKS-R). (DOCX 17 kb

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

Abstract 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)