Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.

BACKGROUND: Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. METHODS: The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analysed descriptively, and principles of thematic content analysis was applied to qualitative data. RESULTS: Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs ranged from research partners to patient advocates, advisors and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers. Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs) and the presence of a PRP coordinator. CONCLUSION: This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP-researcher collaboration based on scientific evidence.

Patients' experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)-a qualitative evaluation.

BACKGROUND: Despite continuous improvements in anti-rheumatic pharmacological treatment, people with chronic inflammatory arthritis still report substantial disease impact. Based on the framework for complex interventions, we thus developed INSELMA, a novel nurse-coordinated multidisciplinary self-management intervention for patients with rheumatoid arthritis, psoriatic arthritis or axial spondyloarthritis. Based on individual biopsychosocial assessments, a rheumatology nurse facilitated goal setting and coordinated interdisciplinary support. The aim of this study was to explore the patients' experience of participating in the six-months INSELMA intervention. METHODS: Individual semi-structured interviews were conducted with 15 of the participants after their final follow-up. Thematic analysis was applied. RESULTS: The analysis derived four overall themes. (1) A new opportunity at the right time. The participants' disease impacted all areas of daily life. Participation in INSELMA was experienced as an opportunity to improve symptoms and together reduce long-held challenges they had fought alone, until now. (2) The importance of person-centred goals. The participants found it meaningful to work with their individual goals, which encompassed physical, psychological, and social factors. Having time between consultations to work with goals at home was important. (3) Empathy, partnership and a little nudging from health professionals are essential. The empathic nurses' continuous support and coaching helped participants become aware of their own resources. The participants highlighted having access to support from a physiotherapist and occupational therapist with rheumatology experience as important. (4) I got more than I could have hoped for. Most of the participants experienced decreased symptom load and improvement in physical strength, mobility, sleep, and mood as well as increased energy, knowledge, and self-management ability. The participants expressed new hope for the future with an improved ability to manage their symptoms and work towards new goals. CONCLUSION: The participants found the INSELMA intervention meaningful and feasible. They experienced decreased disease impact and increased activity levels, facilitated by empathy and self-management support from health professionals.

Patients' perspectives on adherence to cardiovascular screening consultation and lifestyle changes.

BACKGROUND: Rheumatoid arthritis (RA) poses a significant health burden, with patients facing a twofold higher risk of cardiovascular diseases compared to the general population. As a results, the international recommendations set forth by the European Alliance of Associations for Rheumatology, advocate for a structured cardiovascular (CV) risk management and adherence to a healthy lifestyle for patients with RA. Unhealthy lifestyle factors not only impact overall health but also worsen inflammation and hinder treatment response in patients with RA Despite these recommendations, there remains a knowledge gap regarding patients' attitudes towards screening participation and lifestyle changes. Therefore, the aims of this study were firstly to explore the perspectives of patients with rheumatoid arthritis on participation and adherence to cardiovascular screening. Secondly, to explore patients' perspectives on lifestyle changes. METHODS: Semi-structured interviews based on a hermeneutic approach were conducted. The analysis was guided by qualitative content analysis, employing an inductive approach. RESULTS: Nine women and seven men, aged 47 to 76 years, diagnosed with RA, and who had attended at least one CV screening session, took part in the study. Two primary themes, along with four sub-themes, emerged from the analysis. The first main theme, Accepting an offer, encompassed the sub-themes of Engagement in the screening consultation and Risk awareness, reflecting participants' views on their involvement in, and commitment to, CV screening. The second theme pertained to participants' perspectives on lifestyle changes: Living with a chronic disease and embracing changes, described through the sub-themes of Motivation for lifestyle changes and Strategies to achieve lifestyle changes. CONCLUSION: Motivations for taking part in the screening differed among the participants, ranging from simply accepting an invitation to joining as a proactive precaution. In general, there was unanimous agreement among the participants that the screening proved to be a positive encounter. While it may not have immediately prompted significant lifestyle alterations, it did enhance their awareness of risks and underscored the significance of maintaining a healthy lifestyle. Overall, the individual guidance and support for patients with rheumatoid arthritis should entail awareness of CV risk combined with support to lifestyle changes the participants want to pursue.

Participation in cardiovascular screening consultations, the who, when and why - A cohort study on patients with rheumatoid arthritis.

BACKGROUND: In accordance with the EULAR recommendations, the Danish Hospital for Rheumatic Diseases have systematically invited patients with rheumatoid arthritis (RA) to cardiovascular (CV) risk assessment since 2011. Patients with high risk are invited to a follow-up screening after one year. To optimize the screening and tailor it to individual needs, information about who accepts vs. declines follow-up is needed. Thus, the aim of this study was to explore participation in systematic CV risk assessment among patients with RA. Furthermore, to explore differences between patients with low vs. high risk, and between patients with high risk who accept vs. decline follow-up. METHODS: Data from 2,222 outpatients with RA in the period 2011-2021 were retrieved, and of these 1,522 were under 75 years and eligible to be invited. To assess the 10-year risk for CV death, the modified Systematic Coronary Risk Evaluation (mSCORE), derived by multiplying the SCORE by 1.5, was used. Logistic regression analyses were used to explore differences in CV risk factors (triglycerides, HbA1c, lifestyle factors) and measures of disease impact (pain, fatigue, patient global assessment, HAQ, EQ-5D-5L) between patients with low vs. high risk. Differences between high risk patients who accepted vs. declined follow-up were analysed using Wilcoxon rank sum test and chi-squared test for groups. RESULTS: One thousand one hundred forty-nine received a CV screening invitation and 91 declined participation. Patients with high risk had significantly longer disease duration (OR; 95 CI) (1.017; 1.002-1.032), higher levels of triglycerides (1.834; 1.475-2.280), HbA1C (1.046; 1.020-1.070), pain (1.006; 1.001-1.012), and HAQ-score (1.305; 1.057-1.612) compared to patients with low risk and they more often declined follow-up (43% vs. 28%, p < 0.001). Those who declined a follow-up invitation were older (p = 0.016) and had shorter disease duration (p = 0.006) compared to those who accepted follow-up. CONCLUSION: A first CV screening consultation was accepted by most patients with RA, while only every other patient with high to very high CV risk adhered to a follow-up screening consultation. Neither measures of disease impact nor lifestyle factors were associated with adherence. Further studies are needed to explore the patients' motivation, barriers and facilitators for adherence or non-adherence to a follow-up consultation.

A joint venture: patients' experiences with goal setting in rheumatology rehabilitation - a qualitative study.

PURPOSE: To explore how patients with rheumatic musculoskeletal diseases (RMDs) perceive participation in the goal setting process prior to interdisciplinary rehabilitation. METHODS: We conducted semi-structured interviews with 22 participants admitted to an interdisciplinary rehabilitation stay for patients with RMDs at two Danish rehabilitation centres. Qualitative content analysis was applied. RESULTS: The participants perceived goal setting as a joint venture between two parties: the health professionals and the participant. Three categories were formed, which described both facilitators and barriers in the process. Responsibility for goal setting described the importance of shared responsibility, or health professionals as experts, taking full responsibility for goal setting. Equipped for goal setting included perceptions of being well prepared for the process, or considerations that goal setting was difficult because of a lack of information. An equal member of the team entailed both the feeling of being recognised as one in the team, or feeling like an outsider. CONCLUSION: Goal setting is perceived as a challenge by some patients. Participation in goal setting depends on both the capacity and the opportunity to participate which are factors linked to patients' level of health literacy.

Patients largely perceive goal setting as a joint venture, constituting a partnership aimed at sharing decisions regarding one or more rehabilitation goals, yet, for some patients, active participation in this joint venture poses challenges.When patients perceive a shared responsibility, acquire appropriate and sufficient knowledge prior to the process and feel accepted as whole persons based on a biopsychosocial approach it facilitates goal setting.Health professionals should be aware of barriers perceived by patients, such as abdicating responsibility because they view health professionals as authority figures, feeling uncertain about the purpose of setting goals and having difficulties in receiving and applying information.Patients' health literacy as well health literacy responsiveness may be of importance to the experience of barriers to shared decisions and goal setting among patients with RMDs.

Development of a complex Interdisciplinary Nurse-coordinated SELf-MAnagement (INSELMA) intervention for patients with inflammatory arthritis.

BACKGROUND: Apart from a consistent focus on treating inflammation, patients with inflammatory arthritis (IA) report a range of unmet needs. Many experience not only residual symptoms but also various other physical, psychological, and social effects. Therefore, this study aimed to develop a complex Interdisciplinary Nurse-coordinated self-management (INSELMA) intervention for patients with IA, as an add-on treatment to usual outpatient care for those with substantial disease impact. METHODS: This study followed the British Medical Research Council's updated framework for developing complex interventions. The process encompassed the following steps: (1) The evidence base was identified; (2) workshops were held, involving 38 relevant stakeholders (managers, physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists from hospitals and municipalities, and two patient research partners), to discuss and further develop the preliminary ideas; (3) relevant theories were identified (i.e., self-efficacy, acceptance and commitment therapy, and health literacy); (4) the intervention was modeled and remodeled and (5) the results, describing the final INSELMA intervention and outcomes. RESULTS: The INSELMA intervention encompasses an initial biopsychosocial assessment, which is performed by a rheumatology nurse. Then, activities that the participant wishes to improve are identified and goals are set. The nurse refers the participant to a multidisciplinary team and coordinates their support and relevant services in the participant's municipality. In addition, the health professionals have the opportunity to hold two interdisciplinary conferences during the intervention period. The participant and the health professionals work to achieve the set goals during a 6-month period, which ends with a status assessment and a discussion of further needs. The INSELMA intervention aims to increase self-management, reduce the impact of IA (e.g., pain, fatigue, sleep problems, and absenteeism), and increase self-efficacy, quality of life, mental well-being, work ability, and physical activity. CONCLUSIONS: The development of the INSELMA intervention involved stakeholders from two Danish rheumatology outpatient clinics, patient research partners and municipalities. We believe that we have identified important mechanisms to increase the self-management and quality of life of people with IA and to decrease the disease impact in those who are substantially affected. The health professionals involved have developed competences in delivering the intervention and it is ready to be tested in a feasibility study.

2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases.

OBJECTIVES: Fatigue is prevalent in people with inflammatory rheumatic and musculoskeletal diseases (I-RMDs) and recognised as one of the most challenging symptoms to manage. The existence of multiple factors associated with driving and maintaining fatigue, and the evidence about what improves fatigue has led to a multifaceted approach to its management. However, there are no recommendations for fatigue management in people with I-RMDs. This lack of guidance is challenging for those living with fatigue and health professionals delivering clinical care. Therefore, our aim was to develop EULAR recommendations for the management of fatigue in people with I-RMDs. METHODS: A multidisciplinary taskforce comprising 26 members from 14 European countries was convened, and two systematic reviews were conducted. The taskforce developed the recommendations based on the systematic review of evidence supplemented with taskforce members' experience of fatigue in I-RMDs. RESULTS: Four overarching principles (OAPs) and four recommendations were developed. OAPs include health professionals' awareness that fatigue encompasses multiple biological, psychological and social factors which should inform clinical care. Fatigue should be monitored and assessed, and people with I-RMDs should be offered management options. Recommendations include offering tailored physical activity and/or tailored psychoeducational interventions and/or, if clinically indicated, immunomodulatory treatment initiation or change. Patient-centred fatigue management should consider the individual's needs and preferences, their clinical disease activity, comorbidities and other psychosocial and contextual factors through shared decision-making. CONCLUSIONS: These 2023 EULAR recommendations provide consensus and up-to-date guidance on fatigue management in people with I-RMDs.

Involving patients as research partners in research in rheumatology: a literature review in 2023.

OBJECTIVE: The inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in rheumatology. The level of involvement of PRPs in translational research in rheumatology remains unknown, while in randomised clinical trials (RCTs), it has been reported to be 2% in 2020. Therefore, we aimed to assess the involvement of PRPs in recent translational studies and RCTs in rheumatology. METHODS: We conducted a scoping literature review of the 80 most recent articles (40 translational studies and 40 RCTs) from four target diseases: rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus and lower extremity osteoarthritis. We selected 20 papers from each disease, published up until 1 March 2023, in rheumatology and general scientific journals. In each paper, the extent of PRP involvement was assessed. Analyses were descriptive. RESULTS: Of 40 translational studies, none reported PRP involvement. Of 40 RCTs, eight studies (20%) reported PRP involvement. These trials were mainly from Europe (75%) and North America (25%). Most of them (75%) were non-industry funded. The type of PRP involvement was reported in six of eight studies: six studies reported PRP participation in the study design or design of the intervention and two of them in the interpretation of the results. All the trials reporting the number of PRPs (75%), involved at least two PRPs. CONCLUSION: Despite a worldwide movement advocating for increased patient involvement in research, PRPs in translational research and RCTs in rheumatology are significantly under-represented. This limited involvement of PRPs in research highlights a persistent gap between the existing recommendations and actual practice.

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research.

BACKGROUND: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. OBJECTIVES: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. DISCUSSION: Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. CONCLUSION: We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide.

Developing a complex vocational rehabilitation intervention for patients with inflammatory arthritis: the WORK-ON study.

BACKGROUND: People with inflammatory arthritis often experience challenges at work and balancing paid work and energy in everyday life. Low work ability is common, and people with inflammatory arthritis face high risks of losing their jobs and permanent exclusion from the labour market. Context-specific tailored rehabilitation targeting persons with inflammatory arthritis is limited. The aim of this study is to describe the development of WORK-ON - a vocational rehabilitation for people with inflammatory arthritis. METHODS: Following the Medical Research Council's framework for complex interventions, WORK-ON was developed based on existing evidence, interviews with patients and rehabilitation clinicians, a workshop, and an iterative process. RESULTS: The six-month vocational rehabilitation, WORK-ON, consists of 1) an initial assessment and goal setting by an occupational therapist experienced in rheumatology rehabilitation, 2) coordination by the same occupational therapist and individual support, including navigating across the primary and secondary health sectors, as well as social care, 3) group sessions for peer support, and 4) optionally individually tailored consultations with physiotherapists, nurses, or social workers. CONCLUSION: WORK-ON is ready to be tested in a feasibility study. TRIAL REGISTRATION: The Regional Committees on Health Ethics for Southern Denmark stated that no formal ethical approval was necessary in this study (20,192,000-105).

Relatives' negotiations with healthcare professionals during older people's admission in an emergency department: An ethnographic study.

BACKGROUND: Relatives are recognised as important for older patients' care and treatment. Variations in relatives' opportunities to negotiate the quality and continuity of older people's care and treatment can potentially lead to inequality in older people's access to care and treatment. AIM: This study aimed to examine relatives' opportunities and strategies for negotiation with health care professionals (HCPs) during the admission of older people to emergency departments in Denmark. MATERIALS AND METHODS: We planned a qualitative ethnographical study employing a hermeneutic approach. Observations focused on social situations and interactions between relatives and HCPs. The analysis was guided by qualitative content analysis. RESULTS: The analysis derived one main theme, attitude to action, containing three subthemes: frustration obtaining access, presenting the case and a powerful relationship. Being active appeared to be essential to achieving possibilities for negotiation with HCPs. DISCUSSION: Inspired by Bourdieu, habitus, doxical values and institutional logics of relatives seem to affect their opportunities to negotiate with HCPs during older people's admission to an emergency department. CONCLUSION: Active and proactive relatives seem to have better opportunities to negotiate with HCPs during older people's acute hospital admission than reactive, passive and hesitant relatives. The logic of public management and the medical profession seem to dominate and influence doxa in the EDs and put special demands on the relatives. This imbalance constitutes a risk of inequality in older people's access to health.

Educational readiness among health professionals in rheumatology: low awareness of EULAR offerings and unfamiliarity with the course content as major barriers-results of a EULAR-funded European survey.

BACKGROUND: Ongoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings. METHODS AND PARTICIPANTS: We developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline. RESULTS: The questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were 'professional development', 'prevention and lifestyle intervention'. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers. CONCLUSIONS: To promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.

Self-management support needs of patients with inflammatory arthritis and the content of self-management interventions: a scoping review.

BACKGROUND: Self-management skills can empower a person to manage the physical, psychological, and social impact of a health condition. However, the components of self-management interventions differ widely between studies and interventions. By performing a scoping review, we aimed to describe patients' self-management needs and how health professionals (HPs) can provide effective self-management support to patients with inflammatory arthritis (IA). OBJECTIVES: 1) to identify the evidence for self-management support needs of patients with IA, and 2) to identify the content (theory/theoretical approach, mode of delivery, duration and frequency) of self-management interventions that target patients with IA. METHODS: In May 2021, we performed a systematic literature search (from 2000 onward) in five databases (CINAHL (Ebsco), Cochrane Library, Embase (Ovid), Medline (Ovid) and PsycINFO (Ovid)) regarding self-management in patients with IA. RESULTS: Out of 11,748 records identified, we included 31 articles describing patients' support needs and 33 articles describing the content of self-management interventions. Patients' support needs were sorted into six topics: 1) disease impact and the pharmacological treatment, 2) care continuity and relations with HPs, 3) the importance of non-pharmacological treatment, 4) the need for support from family and friends, 5) support needs related to work issues, and 6) contextual preferences for self-management support. The theory/theoretical approach, mode of delivery, duration and frequency varied widely and were often unclearly or insufficiently described. In addition, the self-management concept was scarcely - or not - defined in the included articles. The identified topics for support needs were compared with the described content in the included articles. Only a few self-management interventions focused on patients' need for support in relation to work, and to family and friends. CONCLUSION: HPs provided self-management support to patients with IA in various ways, but there were gaps between the patients' support needs and the identified interventions. In developing self-management interventions, the self-management concept needs to be defined and a clear theory is required to support the development of the intervention. Future studies should seek to investigate various modes of delivery, frequency and duration, to develop effective interventions that meet patients' support needs.

Readmission is experienced as inevitable among older adults receiving homecare: A qualitative interview study.

BACKGROUND: Older adults receiving homecare have an increased risk of readmission. The transition from hospital to home can be experienced as unsafe, and older adults describe themselves as vulnerable during the post-discharge period. Thus, the objective was to explore the experiences of unplanned readmissions among older adults who receive homecare. METHODS: We conducted qualitative individual semi-structured interviews with older adults, 65 years or above, receiving homecare and being readmitted to an emergency department (ED) between August and October 2020. Data were analysed by systematic text condensation as described by Malterud. FINDINGS: We included 12 adults aged 67-95 years, seven were male, and eight lived alone. The analysis derived three themes: (1) Responsibility and security at home, (2) the role of family, friends and homecare and (3) the importance of trust. The older adults felt that the hospital strived for too-early discharge, as they still did not feel well. They worried about how to manage their daily life. Active involvement of their family increased their sense of security, but those living alone described feeling anxious being at home by themselves after discharge. Although older adults did not wish to go to the hospital, inadequate treatment at home and the feeling of responsibility for their illness made them feel insecure. They expressed that earlier negative experiences affected their trust in the system and their inclination to ask for help. CONCLUSIONS: The older adults were discharged from the hospital despite feeling ill. They described inadequate competencies from healthcare professionals in the home as a contributing factor to their readmission. The readmission increased a sense of security. Support from the family in the process was essential and provided a sense of security, whereas older adults living alone experienced feelings of insecurity in the home environment.

Perceived challenges at work and need for professional support among people with inflammatory arthritis - A qualitative interview study.

BACKGROUND: People with inflammatory arthritis (IA) often experience low work ability, and up to 38% lose their jobs during the initial years after the diagnosis of IA. AIM: We explore the perceived challenges at work and identify the need for professional support among Danish people with IA. MATERIALS/METHODS: Individual explorative interviews based on a hermeneutic approach. We used Graneheim and Lundman's qualitative content analysis. RESULTS: Eleven women and four men with IA (aged 36-68 years) who worked full or part time, or were on short-term sick leave, participated. The analysis revealed one main theme, Balancing work as part of everyday life, and four sub-themes: 1) Working despite challenges, 2) Prioritising energy for work, 3) Fatigue leading to lack of control, and 4) Need for flexibility and recognition. CONCLUSIONS: People with IA prioritise staying at work despite experiencing challenges with fatigue and balancing their work and energy in everyday life. They need recognition, support and flexibility at work to be able to continue in their jobs. SIGNIFICANCE: The study highlights the need to be aware of occupational balance and, thus, to include other aspects in life apart from just work. It points at occupational therapists as relevant partners in vocational rehabilitation.

Barriers and facilitators for coherent rehabilitation among people with inflammatory arthritis - a qualitative interview study.

BACKGROUND: People with chronic diseases have contact with several different professionals across hospital wards, municipality services and general practice and often experience lack of coherence. The purpose was to explore perceived barriers and facilitators to coherent rehabilitation pathways for health care users with inflammatory arthritis and how coherence can be improved. METHODS: Semi-structured individual interviews were conducted before a planned inpatient rehabilitation stay, 2-3 weeks and 4-6 months after discharge. Thematic reflexive analysis guided the analysis of data. Concepts of person-centred care, complex adaptive systems and integrated care were applied in the interpretations. RESULTS: In all, 11 participants with IA were included. There was one overarching theme, The importance of a person-centred approach, illuminating the significance of professionals who respect healthcare user' preferences. To use a person-centred approach, demands professionals who are interested in exploring the persons own values, preferences and experiences and incorporate these when planning care and rehabilitation.Connected to the overarching theme, three sub-themes were derived; 1) Experiences of empowerment and dis-empowerment, covering that most want to be in control and act themselves, but felt overwhelmed and lost energy and they tended to give up; 2) Experiences of communication and coordination, encompass how people feel forced to take on coordination and communication tasks themselves although they do not always feel qualified for this. Some asked for a coordination person and 3) Facing everyday life after discharge, covering how initiatives taken by professionals were not always experienced as helpful after discharge. Some gave up and some tried to find alternative paths themselves. CONCLUSION: Professionals taking a person-centred approach facilitated coherent rehabilitation pathways. This encompassed care with respect for individual needs and professionals who empowered patients to self-management. Furthermore, to be aware that interprofessional communication and coordination need to take place both between professional within the same department, between departments and between professionals in different sectors. After discharge, some patients were challenged in their everyday life when trying to follow the advice from the professionals. Professionals, who do not use a person-centred approach, hinder coherence. Patients thus feel compelled to take on communication and coordination tasks.

Experiences during the COVID-19 Pandemic among People with Inflammatory Arthritis: "Reopening of Society Is Harder than Lock-Down"-A Qualitative Interview Study.

People with inflammatory arthritis (IA) treated with immunosuppressive disease-modifying anti-rheumatic drugs (DMARDs) were initially considered to have an increased risk of severe illness from the SARS-CoV-2 virus compared to the general population. The aim of this study was to explore how people with IA experienced restrictions during the pandemic and the possible impact of vaccination on their protection against COVID-19 and their everyday lives. Nineteen people with IA were interviewed in May-August 2021; shortly thereafter they were enrolled in the Danish national COVID-19 vaccination programme. Concurrently, society gradually reopened after a national complete lockdown. The analysis was inspired by inductive qualitative content analysis. Participants expressed a lack of targeted information on the specific risk associated with IA if they contracted COVID-19. They had to define their own level of daily-life restrictions to protect themselves and their families. They were impacted by inconsistent announcements by the authorities, and some expressed concerns regarding the potential influence of DMARDs on vaccine effectiveness. A societal spirit of being "in this together" emerged through the lockdown, and some were concerned that the reduced level of restrictions in the reopened society would put them at higher risk of a COVID-19 infection and force them to continue self-isolating.

Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with rheumatology professionals in 23 European and Asian countries.

OBJECTIVES: To disseminate and assess the level of acceptability and applicability of the European Alliance of Associations for Rheumatology (EULAR) recommendations for patient education among professionals in rheumatology across Europe and three Asian countries and identify potential barriers and facilitators to their application. METHODS: A parallel convergent mixed-methods design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0-10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. RESULTS: A total of 1159 completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment and inviting patients to provide feedback on patient education delivery. CONCLUSIONS: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools.

Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients' perspectives.

OBJECTIVES: To explore patients' agreement and reasons for agreement or disagreement with the EULAR recommendations for patient education (PE) for people with inflammatory arthritis (IA). METHODS: This mixed-method survey collected data using snowball sampling. The survey had been translated into 20 languages by local healthcare professionals, researchers and patient research partners. It explored the degree to which patients with IA agreed with each recommendation for PE (0=do not agree at all and 10=agree completely) and their rationale for their agreement level in free text questions. Descriptive statistics summarised participants' demographics and agreement levels. Qualitative content analysis was used to analyse the free text data. Sixteen subcategories were developed, describing the reasons for agreement or disagreement with the recommendations, which constituted the categories. RESULTS: The sample comprised 2779 participants (79% female), with a mean (SD) age 55.1 (13.1) years and disease duration 17.1 (13.3) years. Participants strongly agreed with most recommendations (median 10 (IQR: 9-10) for most recommendations). Reasons for agreement with the recommendations included the benefit of using PE to facilitate collaborative care and shared decision making, the value of flexible and tailored PE, and the value of gaining support from other patients. Reasons for disagreement included lack of resources for PE, not wanting information to be tailored by healthcare professionals and a reluctance to use telephone-based PE. CONCLUSION: The EULAR recommendations for PE have been disseminated among patients with IA. Overall, agreement levels were very high, suggesting that they reflect patients' preferences for engaging in collaborative clinical care and using PE to facilitate and supplement their own understanding of IA. Reasons for not completely agreeing with the recommendations can inform implementation strategies and education of healthcare professionals.

The quality of life of older adults acutely admitted to the emergency department: A cross-sectional study.

AIM: To investigate perceptions of individual QoL among acutely admitted older adults and explore whether homecare and readmission were associated with QoL. DESIGN: A cross-sectional study at three Danish Emergency Departments. METHODS: Semi-structured interviews, using the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQol-DW) (range 0-100) with patients ≥65 years, were conducted from August 2018 to July 2019. The differences between patients receiving homecare (yes/no) and readmission (yes/no) were tested using linear regression analyses with bootstrap procedures. RESULTS: Overall, we included 406 patients, of whom 38% received homecare. The mean SEIQoL-DW-score was 76 (SD = 19). The most important areas of individual QoL were Family, Social activities, Health, Everyday life and Leisure activities. Receiving homecare was associated to a significantly lower QoL score: -8 (SE = 2) and a significantly lower score in the categories Family and Health. There was no association between readmission and QoL.