Dialogued into being: Constructing knowledge about hand osteoarthritis from a polyphony of voices in healthcare encounters.

PURPOSE: Multiple knowledge sources inform healthcare. In healthcare encounters, patients and health professionals' ideas intersect to understand illness and disease. Exploring what is thought of as legitimate knowledge, and where those reflections come from is central to the process of improving and developing healthcare. Within this context, we aim to explore how knowledge about hand osteoarthritis (OA) is constructed and negotiated in clinical consultations. METHODOLOGY: The article is based on interviews with 21 patients and 14 health professionals in combination with observation in 16 clinical consultations. Reflexive thematic analysis was used to interpret the data. RESULTS: We generated four themes from codes to tell an interpretive story about how hand OA meaning-making is "talked into being" in patient-provider encounters: from the dominant voice of health professionals, from patients as knowers in the chronic healthcare dialogue, from health professionals and patients constructing knowledge together and from the construction of knowledge in hybrid positions when patients are health professionals and health professionals have hand OA. CONCLUSION: New knowledge about hand OA is co-constructed in the situated context of the clinical encounter through a polyphony of voices-some of which are dominant, while others occupy the periphery-within and between the interactants in dialgue.

Does follow-up really matter? A convergent mixed methods study exploring follow-up across levels of care in rehabilitation of patients with rheumatic and musculoskeletal diseases.

PURPOSE: To explore what patients with rheumatic and musculoskeletal diseases (RMDs) need and receive of follow-up care after specialized rehabilitation, and whether received follow-up is associated with health outcomes after 1 year. Further, to compare these findings with patients' experiences to improve the understanding of how follow-up takes place. METHODS: In a mixed methods study, patients received a rehabilitation programme designed to improve the continuity in rehabilitation across care levels. A total of 168 patients completed questionnaires, of which 21 were also interviewed. RESULTS: At discharge, most patients reported needs for follow-up. These needs were largely met within 1 year, mainly resulting from patients' initiatives to re-connect with previous contacts. The degree of received follow-up was not associated with goal attainment, quality of life, or physical function. Factors related to providers (competence, communication skills), context (delays, limited access to care), and patients (motivation, life situation, preferences) seemed to be decisive for the progress of the rehabilitation process over time. CONCLUSIONS: The results provide evidence that access to follow-up care is crucial to patients with RMDs. However, it also highlights several factors that may influence its impact. These results can be used to optimise design and implementation of future follow-up interventions.

Healthcare providers should take greater responsibility for creating continuity in rehabilitation across levels of care.Follow-up care should be adapted to patients' needs, goals, and preferences as regards content, timing, and mode of delivery.Follow-up should be linked to a rehabilitation plan for each patient to ensure continuity of care.More effective communication systems across service levels should be established.

EULAR recommendations for the non-pharmacological core management of hip and knee osteoarthritis: 2023 update.

INTRODUCTION: Hip and knee osteoarthritis (OA) are increasingly common with a significant impact on individuals and society. Non-pharmacological treatments are considered essential to reduce pain and improve function and quality of life. EULAR recommendations for the non-pharmacological core management of hip and knee OA were published in 2013. Given the large number of subsequent studies, an update is needed. METHODS: The Standardised Operating Procedures for EULAR recommendations were followed. A multidisciplinary Task Force with 25 members representing 14 European countries was established. The Task Force agreed on an updated search strategy of 11 research questions. The systematic literature review encompassed dates from 1 January 2012 to 27 May 2022. Retrieved evidence was discussed, updated recommendations were formulated, and research and educational agendas were developed. RESULTS: The revised recommendations include two overarching principles and eight evidence-based recommendations including (1) an individualised, multicomponent management plan; (2) information, education and self-management; (3) exercise with adequate tailoring of dosage and progression; (4) mode of exercise delivery; (5) maintenance of healthy weight and weight loss; (6) footwear, walking aids and assistive devices; (7) work-related advice and (8) behaviour change techniques to improve lifestyle. The mean level of agreement on the recommendations ranged between 9.2 and 9.8 (0-10 scale, 10=total agreement). The research agenda highlighted areas related to these interventions including adherence, uptake and impact on work. CONCLUSIONS: The 2023 updated recommendations were formulated based on research evidence and expert opinion to guide the optimal management of hip and knee OA.

Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study.

The objective was to explore the associations between patient involvement in the rehabilitation process and improvements in function and goal attainment in the first year after rehabilitation. The longitudinal multicenter study RehabNytte provided data from participants who had been referred to rehabilitation (n = 2113). Quality indicator (QI) pass rates (% yes) were used to assess patient involvement in the rehabilitation process. The Patient-Specific Functional Scale (PSFS) (10 = best possible) was used to assess function. The outcome QI on goal achievement (response options of yes/no) was used to assess goal attainment. Logistic regression and paired sample t-tests were used to examine associations and mean changes in function from rehabilitation admission up to 3, 6, and 12 months. Most participants (95%) were involved in goal-setting, which was positively associated with younger age (OR 0.97, 95% CI 0.95-0.99) and female sex (OR 1.87, 95% CI 1.15-3.02). Function improved over the follow-up period, with greater improvements in the active goal-setting group. Being involved in goal planning almost tripled the odds of goal attainment (OR 2.78, 95% CI 1.60-4.83) and involvement in the rehabilitation plan almost doubled it (OR 1.99, 95% CI 1.41-2.81). Most participants were involved in rehabilitation goal-setting/planning and being involved was associated with beneficial functional outcomes and greater goal attainment.

Delivery of a quality improvement program in team-based rehabilitation for patients with rheumatic and musculoskeletal diseases: a mixed methods study.

PURPOSE: To investigate how a quality improvement program (BRIDGE), designed to promote coordination and continuity in rehabilitation services, was delivered and perceived by providers in routine practice for patients with rheumatic and musculoskeletal diseases. METHODS: A convergent mixed methods approach was nested within a stepped-wedge, randomized controlled trial. The intervention program was developed to bridge gaps between secondary and primary healthcare, comprising the following elements: motivational interviewing; patient-specific goal setting; written rehabilitation-plans; personalized feedback on progress; and tailored follow-up. Data from health professionals who delivered the program were collected and analyzed separately, using two questionnaires and three focus groups. Results were integrated during the overall interpretation and discussion. RESULTS: The program delivery depended on the providers' skills and competence, as well as on contextual factors in their teams and institutions. Suggested possibilities for improvements included follow-up with sufficient support from next of kin and external services, and the practicing of action and coping plans, standardized outcome measures, and feedback on progress. CONCLUSIONS: Leaders and clinicians should discuss efforts to ensure confident and qualified rehabilitation delivery at the levels of individual providers, teams, and institutions, and pay equal attention to each component in the process from admission to follow-up.

Quality in rehabilitation should be characterized by a continuous and coordinated process from goal setting to follow-up.To improve the quality, sufficient involvement of next of kin and external services is needed.Clinicians may need training to build confidence in motivational interviewing, action- and coping planning, feedback on progress, and follow-up.Leaders should organize education sessions, optimize schedules, insert standardized outcome measures, and facilitate collaboration across levels of care and services.

Work Ability in the Year after Rehabilitation-Results from the RehabNytte Cohort.

BACKGROUND: There is limited knowledge regarding the impact of rehabilitation on work ability. The aim of this study was to explore factors associated with work ability 12 months following a multidisciplinary rehabilitation program in a cohort with different diagnoses. METHODS: Of 9108 potentially eligible participants for the RehabNytte research project, 3731 were eligible for the present study, and 2649 participants (mean age 48.6 years, 71% female) consented to contribute with work-related data, and were included. Self-perceived work ability was assessed by the Work Ability Score (WAS) (0-10, 10 = best), during the follow-up period using paired t-tests and logistic regression to examine associations between demographic and disease-related factors and work ability at 12-month follow-up. RESULTS: The mean baseline WAS for the total cohort was 3.53 (SD 2.97), and increased significantly to 4.59 (SD 3.31) at 12-month follow-up. High work ability (WAS ≥ 8) at 12 months was associated with high self-perceived health at the baseline (OR 3.83, 95% CI 2.45, 5.96), while low work ability was associated with a higher number of comorbidities (OR 0.26, 95% CI 0.11, 0.61), medium pain intensity (OR 0.56, 95% CI 0.38, 0.83) and being married or cohabiting (OR 0.61, 95% CI 0.43, 0.88). There were no significant differences in work ability between participants receiving occupational and standard rehabilitation. CONCLUSIONS: Work ability increased significantly over the follow-up period. High work ability at 12-month follow-up was associated with high self-perceived health at baseline, while being married or cohabiting, having higher number of comorbidities, and experiencing medium baseline pain intensity was associated with lower work ability. Rehabilitation interventions targeting these factors may potentially enhance work ability, leading to a positive impact on work participation among people in need of rehabilitation.

Negotiating Professional Tasks in a Hospital: A Qualitative Study of Rheumatologists and Occupational Therapists in the Management of Hand Osteoarthritis.

Purpose: Societal change and rise in demand for healthcare call for new health professional practices and task redistribution. Through negotiated order theory, this study explores how hospital rheumatologists (RT) and occupational therapists (OT) negotiate professional tasks in the clinical management of hand osteoarthritis. Methodology: Fourteen qualitative interviews and 16 observations in clinical consultations were conducted in two hospitals specialized in rheumatology in Norway. Participants included eight OTs, six RTs, and patients in consultations. Data were analyzed using reflexive thematic analysis. Results: Three themes were developed from codes: hierarchical ordering of hospital work impacts interprofessional negotiations; diagnostic organization of tasks preserves RT authority; and evidence-based recommendations in rheumatology enhance OT responsibilities. Overall, RTs and OTs enact tasks in succession where higher-ranking RTs establish a diagnosis and decide the subsequent in-hospital trajectory entrenched in a medical knowledge system. When medicine does not hold evidence-based treatment alternatives for patients, OTs respond by providing therapeutic interventions that are legitimized through international recommendations in rheumatology when they equip patients with tools to cope with chronic illness. Conclusion: Negotiations over tasks do not take place from equal power positions when status and knowledge hierarchies frame professional practices. The enactment of tasks is concurrently highly influenced by the arena of the workplace, where the two professional groups both cross boundaries and work together in concert despite professional differences in order to meet patient interests and provide relevant healthcare.

Exploring Goals and Functional Changes in Reablement for People with Fractures and People with Dizziness and Balance Problems.

Background: Although older people often have challenges with fractures and dizziness/balance problems, knowledge concerning the impact of reablement of people with these conditions is limited. Aim: To explore functional changes in reablement for older home-dwelling people with fractures and dizziness/balance problems regarding 1) occupational performance and satisfaction with performance, 2) physical function and 3) health-related quality of life, and 4) which occupations they prioritize as rehabilitation goals. Material and Methods: The sample is derived from a nationwide clinically controlled trial in Norway consisting of 149 participants with fractures and 113 with dizziness/balance problems who participated in a four to 10-week reablement program. Data were collected at baseline and at 10-week, 6-month, and 12-month follow-up and were analyzed with paired t-tests and analysis of covariance. Occupational priorities were categorized into sub-areas of occupation. Results: Both groups had significant short-, mid-, and long-term improvements in occupational performance and satisfaction with performance. Except for balance from baseline to 12-month follow-up, the fracture group showed significant improvements in physical function and health-related quality of life at all follow-ups. The results varied more in the group with dizziness/balance problems in physical function and health-related quality of life. Functional mobility was the highest prioritized occupational sub-area in both groups. Conclusion: The findings of this study provide extended knowledge about goals and functional changes in people with fractures and dizziness/balance problems following a reablement program. Significance: Tailoring and individual adjustments according to diagnosis may be important in person-centered care in reablement.

Digitally delivered education and exercises for patients with hand osteoarthritis-An observational study.

Hand osteoarthritis (OA) is a common form of OA, for which education and exercise are considered the first-line treatment. The aim of the present study was to examine pain and perceived hand function in participants following 3 months of digitally delivered first-line treatment for hand OA. Three-hundred-and-seventy-nine of 846 participants with clinical signs and symptoms of hand OA completed the study. The digital hand OA treatment program consists of video instructed daily exercises and patient education through text lessons. Pain (NRS, 0 no pain, 10 worst) was the primary outcome, and stiffness (NRS) and the Functional Index for Hand OsteoArthritis (FIHOA, 0 best, 30 worst) were among secondary outcomes. The McNemar test and linear mixed effect regression model were used to assess the changes in outcomes from baseline to 3-month. After three months, the digitally delivered program was associated with a significant decrease in pain intensity (mean change -1.30 (95% CI -1.49, -1.12)) and hand stiffness (mean change -0.81 (95% CI -1.02, -0.60)) but no conclusive changes in the FIHOA scores (mean change 0.3 (95% CI -0.2, 0.7)). The results agree with reports on face-to-face delivered first-line treatment for hand OA suggesting that digital treatment is a viable treatment option in patients with hand OA.

Is multimodal occupational therapy in addition to usual care cost-effective in people with thumb carpometacarpal osteoarthritis? A cost-utility analysis of a randomised controlled trial.

OBJECTIVE: The aim was to evaluate the cost-utility of a 3-month multimodal occupational therapy intervention in addition to usual care in patients with thumb carpometacarpal osteoarthritis (CMC1 OA). METHODS: A cost-utility analysis was performed alongside a multicentre randomised controlled trial including three rheumatology departments in Norway. A total of 180 patients referred to surgical consultation due to CMC1 OA were randomised to either multimodal occupational therapy including patient education, hand exercises, assistive devices and orthoses (n=90), or usual care receiving only information on OA (n=90). The outcome measure was quality-adjusted life-years (QALYs) derived from the generic questionnaire EQ-5D-5L over a 2-year period. Resource use and health-related quality of life of the patients were prospectively collected at baseline, 4, 18 and 24 months. Costs were estimated by taking a healthcare and societal perspective. The results were expressed as incremental cost-effectiveness ratios, and a probabilistic sensitivity analysis with 1000 replications following intention-to-treat principle was done to account for uncertainty in the analysis. RESULTS: During the 2-year follow-up period, patients receiving multimodal occupational therapy gained 0.06 more QALYs than patients receiving usual care. The mean (SD) direct costs were €3227 (3546) in the intervention group and €4378 (5487) in the usual care group, mean difference €-1151 (95% CI -2564, 262). The intervention was the dominant treatment with a probability of 94.5% being cost-effective given the willingness-to-pay threshold of €27 500. CONCLUSIONS: The within-trial analysis demonstrated that the multimodal occupational therapy in addition to usual care was cost-effective at 2 years in patients with CMC1 OA. TRIAL REGISTRATION NUMBER: NCT01794754.

Patient engagement in the development and delivery of healthcare services: a systematic scoping review.

BACKGROUND: Patient engagement (PE) is required to improve future healthcare services. PE in the development and delivery of healthcare services is likely to be complex but is scarcely described. OBJECTIVES: The objective of this scoping review was to summarise primary studies on mesolevel PE regarding structure, process and outcomes. More specifically, the aim was to explore barriers and facilitators to successful PE, how persons are engaged in the process and summarise reported consequences. METHOD: A systematic scoping review was conducted, searching the MEDLINE, EMBASE, Cochrane and PsycINFO databases. Primary studies, published between 7 July 2005 and 4 October 2022, were considered for inclusion. Two reviewers extracted data about PE (eg, attributes of PE settings, facilitators and barriers, and outcomes to PE) and the first author coded the extracted data into structural, processual and outcome themes. RESULTS: Of 8588 identified records, 37 studies were eligible. Most of the included studies were conducted in Europe (n=19; 51%) and North America (n=13; 35%). Structures that ensure sufficient stakeholder representativeness and PE knowledge through education may facilitate the PE process further, regardless of the environmental setting. Interpersonal relationships with uneven power dynamics were reported as noteworthy processual barriers to meaningful PE, while clearly described roles and tasks were reported as important facilitators. In contrast to hard outcomes with operationalised PE effects, the most noteworthy outcomes of PE were reported as soft processual consequences such as patient representatives improving their self-esteem and feeling valued. CONCLUSIONS: Unfortunately, there is a dearth of studies exploring hard and operationalised PE outcomes on healthcare services and patients receiving healthcare. The PE process may be facilitated by dedicated finances to PE education and by ensuring sufficient stakeholder representativeness.

Bridging gaps across levels of care in rehabilitation of patients with rheumatic and musculoskeletal diseases: Results from a stepped-wedge cluster randomized controlled trial.

OBJECTIVE: To compare the effectiveness of a structured goal-setting and tailored follow-up rehabilitation intervention with existing rehabilitation in patients with rheumatic and musculoskeletal diseases. DESIGN: A pragmatic stepped-wedge cluster randomized trial. SETTING: Eight rehabilitation centers in secondary healthcare, Norway. PARTICIPANTS: A total of 374 adults with rheumatic and musculoskeletal diseases were included in either the experimental (168) or the control group (206). INTERVENTIONS: A new rehabilitation intervention which comprised structured goal setting, action planning, motivational interviewing, digital self-monitoring of goal progress, and individual follow-up support after discharge according to patients' needs and available resources in primary healthcare (the BRIDGE-intervention), was compared to usual care. MAIN MEASURES: Patient-reported outcomes were collected electronically on admission and discharge from rehabilitation, and after 2, 7, and 12 months. The primary outcome was patients' goal attainment measured by the Patient Specific Functional Scale (0-10, 10 best) at 7 months. Secondary outcome measures included physical function (30-s Sit-To-Stand test), health-related quality of life (EQ-5D-5L-index), and self-assessed health (EQ-VAS). The main statistical analyses were performed on an intention-to-treat basis using linear mixed models. RESULTS: No significant treatment effects of the BRIDGE-intervention were found for either primary (Patient Specific Functional Scale mean difference 0.1 [95% CI: -0.5, 0.8], p = 0.70), or secondary outcomes 7 months after rehabilitation. CONCLUSION: The BRIDGE-intervention was not shown to be more effective than existing rehabilitation for patients with rheumatic and musculoskeletal diseases. There is still a need for more knowledge about factors that can improve the quality, continuity, and long-term health effects of rehabilitation for this patient group.

Participation in healthcare consultations: A qualitative study from the perspectives of persons diagnosed with hand osteoarthritis.

INTRODUCTION: Scarce health resources and differing views between persons with hand osteoarthritis (OA) and health professionals concerning care preferences contribute to sustaining a gap between actual needs and existing clinical guidelines for hand OA. The aim of this study is to explore the experiences of persons diagnosed with hand OA in their encounters with health services and how those experiences influence negotiations and decision-making in hand OA care. METHODS: Data from 21 qualitative interviews with persons diagnosed with hand OA were collected, transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: Three main themes were developed: symptoms are perceived as ordinary ageing in everyday life, consultations are shaped by trust in healthcare and the responsibilities of prioritisation and self-care govern interactions. CONCLUSION: Ideas of ageing, professional knowledge and self-management dominate hand OA health encounters and contribute to shaping illness perceptions, preferences and opportunities to negotiate decisions in consultations. PATIENT OR PUBLIC CONTRIBUTION: Two patient research partners with hand OA are members of the study project group. One of them is also a co-author of this manuscript.

Associations Between Adherence to Self-Management Activities and Change in Function and Health Outcomes in the Rehabilitation of Patients with Rheumatic and Musculoskeletal Diseases.

OBJECTIVES: To explore the content of, and adherence to, self-management activities reported by patients with rheumatic and musculoskeletal diseases (RMDs), and whether adherence to self-management activities is associated with changes in self-reported health and function over a 1-year period following rehabilitation in specialized healthcare. METHODS: Participants (n = 523) reported function and health outcomes at admission, discharge, and 4, 8 and 12 months post-rehabilitation. Self-management activities reported at discharge were self-evaluated as adherence level at home. Self-management activity content was linked to the International Classification of Functioning, Disability and Health coding system, and summarized as high or low adherence. Associations between adherence to self-management activities and change in outcomes were investigated using a linear mixed model approach with repeated measures. RESULTS: Self-management activities focused mainly on enhanced physical health and managing everyday routines, and seldom addressed work participation. Adherence to self-management activities was challenging with regard to structure and daily life routines, mental health, and the application of knowledge and coping strategies. Adherence to self-management activities was significantly associated with improvements in all outcomes, except for mental health and activities of daily living. CONCLUSION: Adherence to self-management activities, and creating structure and setting everyday routines at home, appear to be important for maintaining health and function over time. Rehabilitation should include a greater focus on mental health challenges and work participation.

Rheumatic disease and fatigue: Participants' experiences of an activity-pacing group.

BACKGROUND: Fatigue is a common symptom of inflammatory rheumatic disease and has a great impact on everyday life. Activity-pacing is proposed as an intervention to increase participation in meaningful activities. AIMS: To explore participants' experiences with an activity-pacing group, how participants perceived self-managing everyday life after group attendance, and their reflections on unmet needs that could enhance self-management of everyday life with fatigue. MATERIALS AND METHODS: Semi-structured interviews were conducted with 10 participants who had attended an activity-pacing group. Thematic analyses were conducted. FINDINGS: Prior to group attendance, the participants expressed an awareness of their lack of knowledge of fatigue. Through group attendance, they increased their understanding of fatigue and their ability to apply strategies to better manage everyday life. Participants found it difficult to balance their energy use and realised that implementing activity-pacing strategies takes time. Therefore, they requested follow-up sessions with the activity-pacing group. They also desire that rheumatologists pay more attention to and acknowledge fatigue. CONCLUSIONS AND SIGNIFICANCE: Enhancing the understanding of fatigue and how to manage everyday life with fatigue, appears to be important. Group interventions led by occupational therapists and with a focus on activity-pacing may be a suitable approach. Follow-up sessions are recommended.

Interventions for osteoarthritis pain: A systematic review with network meta-analysis of existing Cochrane reviews.

Objective: To conduct a network meta-analysis comparing all treatments for osteoarthritis (OA) pain in the Cochrane Library. Design: The Cochrane Library and Epistemonikos were searched for randomized controlled trials (RCTs) about treatments for hip and knee OA. We constructed 17 broad categories, comprising drug treatments, exercise, surgery, herbs, orthotics, passive treatments, regenerative medicine, diet/weight loss, combined treatments, and controls. In addition to a full network analysis, we compared the direct/indirect effects, and studies with shorter-/longer follow-up. CINeMA software was used for assessing confidence in network meta-analysis estimates. Results: We included 35 systematic reviews including 445 RCTs. There were 153 treatments for OA. In total, 491 comparisons were related to knee OA, less on hip OA, and only nine on hand OA. Six treatment categories showed clinically significant effects favoring treatment over control on pain. "Diet/weight loss" and "Surgery" had effect sizes close to zero. The network as a whole was not coherent. Of 136 treatment comparisons, none were rated as high confidence, six as moderate, 13 as low, and 117 as very low. Conclusions: Direct comparison of different available treatment options for OA is desirable, however not currently feasible in practice, due to heterogeneous study populations and lack of clear descriptions of control interventions. We found that many treatments were effective, but since the network as a whole was not coherent and lacked high confidence in the treatment comparisons, we could not produce a ranking of effects.

Organisation, influence, and impact of patient advisory boards in rehabilitation institutions-an explorative cross-sectional study.

BACKGROUND: Patient participation is highlighted as an important facilitator for patient-centered care. Patient participation organised as patient advisory boards (PABs) is an integral part of health care institutions in Norway. More knowledge is needed on how PAB representatives experience patient engagement (PE) with regard to organisation, influence, and impact. The objective was to describe how PAB representatives experience their tasks, roles, and impact on decision-making processes and service delivery in the setting of rehabilitation institutions. METHODS: PAB representatives recruited from rehabilitation institutions completed the Norwegian version of the generic Public and Patient Engagement evaluation tool (Norwegian abbreviation EBNOR). EBNOR is tested for reliability and validity with good results and comprises 35 items within four main domains, policies and practices, participatory culture, collaboration, and influence and impact that provide responses about PE-levels. The domain items are scored from "strongly disagree" to "strongly agree" on a five-point scale, in addition to a don't know category. Items in the domain "influence and impact" are scored from "never" to "all of the time" on a four-point scale. Categorical data were summarized using frequencies and percentages, and response categories were collapsed into three PE-levels: barrier, intermediate, and facilitating level. Free-text responses were analysed according to principles of manifest content analysis, summed up, and used to elaborate the results of the scores. RESULTS: Of the 150 contacted PAB representatives, 47 (32%) consented to participate. The results showed that approximately 75% agreed that the organisation as a whole was strengthened as a result of patient participation. Four out of five domains were scored indicating a facilitating level; policies and practices (53%), participatory culture (53%), collaboration and common purpose (37%), and final thoughts (63%). The modal score in the domain influence and impact was in the intermediate PE-level (44%). Of a total of 34 codes from free text analyses, barriers to PE were coded 26 times, and PE facilitators were coded 8 times. CONCLUSIONS: The findings indicate that most PAB representatives are satisfied with how rehabilitation institutions organise their PAB, but they still experience their impact as limited.

The Public and Patient Engagement Evaluation Tool: forward-backwards translation and cultural adaption to Norwegian.

BACKGROUND: Patient engagement is recommended for improving health care services, and to evaluate its organisation and impact appropriate, and rigorously evaluated outcome measures are needed. METHODS: Interviews (N = 12) were conducted to assess relevance of the Canadian Public and Patient Engagement Evaluation Tool (PPEET) in a Norwegian setting were performed. The tool was translated, back translated, and assessed following cognitive interviews (N = 13), according to the COSMIN checklist. Data quality was assessed in a cross-sectional survey of patient advisory board members from different rehabilitation institutions (N = 47). RESULTS: Interviews with patient board representatives confirmed the relevance of the PPEET Organisational questionnaire in a Norwegian setting and contributed five additional items. Translation and back translation of the original PPEET showed no major content differences. Differences in vocabulary and sentence structure were solved by discussion among the translators. Comments from cognitive interviews mainly related to the use of different synonyms, layout, and minor differences in semantic structure. Results of the cross-sectional survey support the data quality and construct validity of PPEET items, including 95 score comparisons where 76 (80%) were as hypothesized. CONCLUSIONS: The PPEET Organisational questionnaire has been thoroughly translated and tested, and the resulting Evalueringsverktøy for Brukermedvirkning (EBNOR) has adequate levels of comprehensibility and content validity. Further testing for measurement properties is recommended, but given these results, the EBNOR should be considered for assessing patient engagement in a Norwegian health care organisational context.