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.

EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.

BACKGROUND: Since the publication of the 2011 European Alliance of Associations for Rheumatology (EULAR) recommendations for patient research partner (PRP) involvement in rheumatology research, the role of PRPs has evolved considerably. Therefore, an update of the 2011 recommendations was deemed necessary. METHODS: In accordance with the EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 PRPs was convened. The process included an online task force meeting, a systematic literature review and an in-person second task force meeting to formulate overarching principles (OAPs) and recommendations. The level of agreement of task force members was assessed anonymously (0-10 scale). RESULTS: The task force developed five new OAPs, updated seven existing recommendations and formulated three new recommendations. The OAPs address the definition of a PRP, the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. The recommendations address the research type and phases of PRP involvement, the recommended number of PRPs per project, the support necessary for PRPs, training of PRPs and acknowledgement of PRP contributions. New recommendations concern the benefits of support and guidance for researchers, the need for regular evaluation of the patient-researcher collaboration and the role of a designated coordinator to facilitate collaboration. Agreements within the task force were high and ranged between 9.16 and 9.96. CONCLUSION: The updated EULAR recommendations for PRP involvement are more substantially based on evidence. Together with added OAPs, they should serve as a guide for researchers and PRPs and will ultimately strengthen the involvement of PRPs in rheumatology research.

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.

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).

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.

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.

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.

Relatives' negotiation power in relation to older people's acute hospital admission: A qualitative interview study.

BACKGROUND: Acutely admitted older people are potentially vulnerable and dependent on relatives to negotiate and navigate on their behalf. AIM: This study aimed to explore relatives' experiences of their interactions with healthcare professionals during acute hospital admission of older people to derive themes of importance for relatives' negotiations with these professionals. METHOD: A qualitative design was applied. Relatives of acutely admitted older people at two emergency departments in Denmark were interviewed (n = 17). The qualitative content analysis was guided by Graneheim and Lundman's concepts. RESULTS: The analysis derived four themes: (a) Mandate, (b) Incentive, (c) Capability and (d) Attitude to taking action. These four sources of relatives' negotiation power can be illustrated in the MICA model. CONCLUSION: Four themes were identified as important sources of relatives' negotiation power. Since the four sources of power potentially change according to the situation, relatives' negotiation power seems to be context dependent.

Older adults who receive homecare are at increased risk of readmission and mortality following a short ED admission: a nationally register-based cohort study.

BACKGROUND: Older adults admitted to an emergency department (ED) who are dependent on homecare may be especially challenged with respect to readmission and mortality. This study aimed to assess whether receiving homecare prior admission was associated with readmission or mortality within 30 days of a short ED admission and to explore whether the amount of homecare received was associated with an increased risk of readmission or mortality. METHODS: This nationwide register-based cohort study included patients aged 65 or above who were admitted to an ED at any Danish hospital from 1 December 2016 to 30 November 2017 and discharged within 48 h. Data were extracted from national registers through Statistics Denmark. Homecare was categorized into groups; patients without homecare and three groups according to the amount of homecare received per week. Logistic regression analyses were used to explore the association between the four homecare groups and outcomes, readmissions and mortality. RESULTS: In total, 80,517 patients (51% female, median age 75 years) were included in the study. Overall, 64,886 patients without homecare, 15,631 (19%) patients received homecare (64% female, median age 83 years), of which 4938 patients received homecare ≤30 min, 4033 received > 30 min to ≤120 min and 6660 received > 120 min per week. The risk of readmission and mortality increased concurrently with the minutes of homecare received: Patients receiving homecare > 120 min per week had the highest odds ratios (ORs) for readmission within 30 days (OR 1.8 95% CI: 1.7-1.9) and mortality within 30 days (OR 4.5 95% CI: 4.1-4.9) compared with patients without homecare. CONCLUSION: Receiving homecare was associated with an increased risk of readmission and death following a short ED admission. Collaboration between the ED and primary health care sector in relation to rehabilitation and end-of-life care is essential to improve quality of care for older adults who receive homecare, particularly those receiving homecare > 2 h a week, because of their increased risk of readmission and mortality.

Illness Perception After Heart Valve Surgery: Differences Among Men and Women.

BACKGROUND: Illness perception is composed of thoughts, ideas, and beliefs about illness, and a negative illness perception is known to be associated with poor outcomes. Among men and women, clinical outcomes after heart valve surgery are known to differ, but knowledge about differences in illness perception is sparse. OBJECTIVES: The aim of this study is to describe the differences in illness perception among men and women after open heart valve surgery and to identify sociodemographic and clinical characteristics associated with worse illness perception in men and women. METHODS: In a national cross-sectional study combined with register-based clinical and sociodemographic information, data on illness perception were collected with the Brief Illness Perception Questionnaire.Worse illness perception was defined as the worst quartile of each item of the Brief Illness Perception Questionnaire. Multiple logistic regression analyses were conducted to explore characteristics associated with worse illness perception. RESULTS: Of 1084 eligible patients, 32% (n = 349) completed the questionnaire (67% men; mean age, 68 years). Compared with men, women reported significantly worse scores of illness perception in 6 of 8 items. Furthermore, being female, age, length of stay, and comorbidity were associated with worse illness perception (worse quartile of scores). Age, higher educational level, and comorbidity were found to be associated with worse illness perception for men and length of stay for women. CONCLUSION: After open heart valve surgery, illness perception differs among men and women, with women having worse illness perception. Among the total population, being female, age, a longer length of stay, and comorbidity were also associated with worse illness perception.

A Systematic Review of Job Loss Prevention Interventions for Persons with Inflammatory Arthritis.

Purpose To present an overview of the evidence of the effect of job loss prevention interventions, aiming to improve work ability and decrease absenteeism and/or job loss in persons with inflammatory arthritis (IA). Method A systematic literature search in the databases PubMed, EMBASE, CINAHL, PsycINFO and the Cochrane Library was conducted. A search strategy used in a review from 2014 was copied and additional keywords were added with no time restriction. The Cochrane Risk of Bias Tool (RoB 1) was used for quality assessment and the overall quality of each study was determined using predetermined cut-off criteria, categorising studies to be of good-, acceptable- or low quality. Results were summarised narratively. Results Six randomised controlled trials (published in seven articles) were included, one of good quality and five of acceptable quality. One study identified significant improvements in work ability, while three found no significant difference between groups. One study identified significant difference in absenteeism, while two studies identified no difference between the intervention and control groups. Two studies identified significant reduction in job loss, while two studies identified no group difference. The inconsistent results may be due to heterogeneity in interventions and outcome measures used, and the results should therefore be interpreted with caution. Conclusion The results indicate that job loss prevention interventions may have an effect on work ability, absenteeism and in particular job loss among persons with IA. Further good-quality studies regarding job loss prevention interventions for people with IA are still recommended.

A Preference-Sensitive Online Instrument to Support Shared Decision Making for Patients With Pelvic Organ Prolapse: A Pilot Multicenter Randomized Controlled Trial.

A preference-sensitive instrument for women with pelvic organ prolapse was developed to increase shared decision-making. This study aimed to assess the feasibility of a randomized controlled trial to measure the effectiveness of the instrument. A pilot randomized controlled trial was conducted at three Danish gynecological clinics to assess feasibility through recruitment rates, per-protocol use and women's perception of (1) support for decision-making, (2) shared decision-making (Shared Decision-Making Questionnaire), and (3) satisfaction with their decisions. In addition, a focus group interview with participating gynecologists (five gynecologists) was conducted. We invited 226 women and recruited 46 (20%). The most common reason (45%) for nonparticipation was overlooking the invitation in their online public mailbox. Shared Decision-Making Questionnaire showed high data completeness (96%) but indicated a ceiling effect. Women felt the developed instrument supported their decision-making and more so if it was used interactively during consultations. Despite finding the instrument generally useful, gynecologists tended to apply the instrument inconsistently and not per protocol (41%), and some used it as a template for all consultations. This pilot study indicates that recruitment methods, for a future randomized controlled trial, for example, nurse-led preconsultations, need reconsideration due to low recruitment rates and inefficient per-protocol use. In a future randomized controlled trial, cluster randomization should avoid the carryover effect bias.

Pharmacological treatment of psoriatic arthritis: a systematic literature research for the 2019 update of the EULAR recommendations for the management of psoriatic arthritis.

OBJECTIVE: To perform an update of a review of the efficacy and safety of disease-modifying antirheumatic drugs (DMARDs) in psoriatic arthritis (PsA). METHODS: This is a systematic literature research of 2015-2018 publications on all DMARDs in patients with PsA, searching Medline, Embase and the Cochrane Library. Efficacy was assessed in randomised controlled trials. For safety, cohort studies, case-control studies and long-term extensions (LTEs) were analysed. RESULTS: 56 publications (efficacy: n=33; safety n=23) were analysed. The articles were on tumour necrosis factor (TNF) inhibitors (n=6; golimumab, etanercept and biosimilars), interleukin (IL)-17A inhibitors (n=10; ixekizumab, secukinumab), IL-23-p19 inhibitors (n=2; guselkumab, risankizumab), clazakizumab (IL-6 inhibitor), abatacept (CD80/86 inhibitor) and ABT-122 (anti-TNF/IL-17A), respectively. One study compared ustekinumab (IL-12/23i) with TNF inhibitor therapy in patients with entheseal disease. Three articles investigated DMARD tapering. Trials on targeted synthetic DMARDs investigated apremilast (phosphodiesterase-4 inhibitor) and Janus kinase inhibitors (JAKi; tofacitinib, filgotinib). Biosimilar comparison with bio-originator showed non-inferiority. Safety was evaluated in 13 LTEs, 9 cohort studies and 1 case-control study investigating malignancies, infections, infusion reactions, multiple sclerosis and major cardiovascular events, as well as efficacy and safety of vaccination. No new safety signals were identified; however, warnings on the risk of venous thromboembolic events including pulmonary embolism when using JAKi were issued by regulators based on other studies. CONCLUSION: Many drugs in PsA are available and have demonstrated efficacy against placebo. Efficacy varies across PsA manifestations. Safety must also be taken into account. This review informed the development of the European League Against Rheumatism 2019 updated PsA management recommendations.

2019 EULAR recommendations for the generic core competences of health professionals in rheumatology.

BACKGROUND/OBJECTIVES: To maintain and optimise the quality of care provided by health professionals in rheumatology (HPRs), adequate educational offerings are needed. This task force (TF) aimed to develop evidence-based recommendations for the generic core competences of HPRs, with specific reference to nurses, physical therapists (PTs) and occupational therapists (OTs) to serve as a basis for their postgraduate education. METHODS: The EULAR standardised operating procedures for the development of recommendations were followed. A TF including rheumatologists, nurses, PTs, OTs, patient-representatives, an educationalist, methodologists and researchers from 12 countries met twice. In the first TF meeting, 13 research questions were defined to support a systematic literature review (SLR). In the second meeting, the SLR evidence was discussed and recommendations formulated. Subsequently, level of evidence and strength of recommendation were assigned and level of agreement (LoA) determined (0-10 rating scale). RESULTS: Three overarching principles were identified and 10 recommendations were developed for the generic core competences of HPRs. The SLR included 79 full-text papers, 20 of which addressed the competences, knowledge, skills, attitudes and/or educational needs of HPRs from multiple professions. The average LoA for each recommendation ranged from 9.42 to 9.79. Consensus was reached both on a research and educational agenda. CONCLUSION: Evidence and expert opinion informed a set of recommendations providing guidance on the generic core competences of HPRs. Implementation of these recommendations in the postgraduate education of HPRs at the international and national level is advised, considering variation in healthcare systems and professional roles.

2018 update of the EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis.

To update the European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of chronic inflammatory arthritis (CIA) using the most up to date evidence. The EULAR standardised operating procedures were followed. A task force of rheumatologists, health professionals and patients, representing 17 European countries updated the recommendations, based on a systematic literature review and expert consensus. Higher level of evidence and new insights into nursing care for patients with CIA were added to the recommendation. Level of agreement was obtained by email voting. The search identified 2609 records, of which 51 (41 papers, 10 abstracts), mostly on rheumatoid arthritis, were included. Based on consensus, the task force formulated three overarching principles and eight recommendations. One recommendation remained unchanged, six were reworded, two were merged and one was reformulated as an overarching principle. Two additional overarching principles were formulated. The overarching principles emphasise the nurse's role as part of a healthcare team, describe the importance of providing evidence-based care and endorse shared decision-making in the nursing consultation with the patient. The recommendations cover the contribution of rheumatology nursing in needs-based patient education, satisfaction with care, timely access to care, disease management, efficiency of care, psychosocial support and the promotion of self-management. The level of agreement among task force members was high (mean 9.7, range 9.6-10.0). The updated recommendations encompass three overarching principles and eight evidence-based and expert opinion-based recommendations for the role of the nurse in the management of CIA.

EULAR recommendations for the management of psoriatic arthritis with pharmacological therapies: 2019 update.

OBJECTIVE: To update the European League Against Rheumatism (EULAR) recommendations for the pharmacological treatment of psoriatic arthritis (PsA). METHODS: According to the EULAR standardised operating procedures, a systematic literature review was followed by a consensus meeting to develop this update involving 28 international taskforce members in May 2019. Levels of evidence and strengths of recommendations were determined. RESULTS: The updated recommendations comprise 6 overarching principles and 12 recommendations. The overarching principles address the nature of PsA and diversity of both musculoskeletal and non-musculoskeletal manifestations; the need for collaborative management and shared decision-making is highlighted. The recommendations provide a treatment strategy for pharmacological therapies. Non-steroidal anti-inflammatory drugs and local glucocorticoid injections are proposed as initial therapy; for patients with arthritis and poor prognostic factors, such as polyarthritis or monoarthritis/oligoarthritis accompanied by factors such as dactylitis or joint damage, rapid initiation of conventional synthetic disease-modifying antirheumatic drugs is recommended. If the treatment target is not achieved with this strategy, a biological disease-modifying antirheumatic drugs (bDMARDs) targeting tumour necrosis factor (TNF), interleukin (IL)-17A or IL-12/23 should be initiated, taking into account skin involvement if relevant. If axial disease predominates, a TNF inhibitor or IL-17A inhibitor should be started as first-line disease-modifying antirheumatic drug. Use of Janus kinase inhibitors is addressed primarily after bDMARD failure. Phosphodiesterase-4 inhibition is proposed for patients in whom these other drugs are inappropriate, generally in the context of mild disease. Drug switches and tapering in sustained remission are addressed. CONCLUSION: These recommendations provide stakeholders with an updated consensus on the pharmacological management of PsA, based on a combination of evidence and expert opinion.

Flares in rheumatoid arthritis: do patient-reported swollen and tender joints match clinical and ultrasonography findings?

OBJECTIVES: To investigate how patient-reported flares in RA are related to clinical joint examination and inflammation detected by US. METHODS: Eighty RA patients with DAS28-CRP <3.2 and no swollen joints at baseline were followed for 1 year. In case of patient-reported hand flare with swollen and tender joints (SJ and TJ, respectively), patients underwent clinical examination for SJ/TJ and US of bilateral wrists, MCP and PIP 1st-5th, six extensor tendon compartments and wrist flexor tendons for synovitis/tenosynovitis. Percentage agreement and kappa were calculated between patient-reported SJ and TJ, clinical examination for SJ/TJ and US findings indicative of inflammation. With US as reference, sensitivity, specificity, positive/negative predictive value and accuracy of patient-reported and clinically examined joints were determined. RESULTS: Hand flare was reported by 36% (29/80) of patients. At time of flare, all clinical and ultrasonographic measures of disease activity deteriorated compared with baseline. Agreement between patient-reported SJ/TJ, clinically examined SJ/TJ and US was slight (kappa = 0.02-0.20). Patients and clinicians agreed in 79-93% of joints, more frequently on SJ than TJ. With US as reference, specificities were 86-100% and 88-100%, and sensitivities 12-34% and 4-32% for patient-reported SJ/TJ and clinically examined SJ/TJ, respectively. CONCLUSION: Over 12 months of follow-up, hand flare was reported by every third RA patient. Self-reported flares were associated with increased disease activity as determined by clinical examination and US. Patient-reported joint assessment may aid in capturing flares between routine clinical visits.

Pelvic organ prolapse and treatment decisions- developing an online preference-sensitive tool to support shared decisions.

BACKGROUND: Female patients with pelvic organ prolapse and clinicians need to take decisions regarding treatment that are often unpredictable in relation to how they impact the future everyday lives of the patients. This study formed the developmental phase of a larger study to develop and test an online tool to support shared decision-making. METHODS: Patients, health care professionals and other stakeholders participated in the development and evaluation process of this tool. The collected data was generated from observational studies, exploratory interviews with prompt cards and workshops with end users from four Danish gynecology outpatient clinics. RESULTS: Content analysis led to important themes. For the patients three themes emerged: 1) how the impact of symptoms on everyday life affected the need for relief, 2) their bodily perception and sex life and 3) their worries about the future. For clinicians the different symptoms and their severity was a main theme. CONCLUSIONS: This article provides an overall description and discussion of the development methodology. It demonstrates how user involvement informed the prototyping process and how patients' preferences were included in the final prototype. Whether the tool actually increases SDM, remains to be tested in a pilot feasibility study.

Bed bath with soap and water or disposable wet wipes: Patients' experiences and preferences.

AIMS AND OBJECTIVES: To gain an in-depth understanding of patients' preferences regarding two bed bath methods: soap and water and disposable wet wipes. BACKGROUND: Bed baths allow hospitalised, bedridden patients to stay clean and fresh. They serve a number of purposes: health promotion, social propriety and pure pleasure. Traditionally, soap and water have been used for personal hygiene, but in recent years soap and water have increasingly been replaced by the use of disposable wet wipes. DESIGN: A qualitative study with a hermeneutical-phenomenological approach was chosen to explore and understand patients' experiences of bed bath methods. METHODS: Semi-structured, individual, in-depth interviews with 16 bedridden patients from three wards were conducted. The software program nvivo was used to structure the transcribed interviews and assist in the initial data analysis. The data were analysed and interpreted within a phenomenological-hermeneutical framework. COREQ guidelines were used in the preparation of this paper (See Supporting information Appendix S1). RESULTS: Four overall themes were identified: "Creating a sense of cleanliness," "Preferences and concerns in different situations," "Cleanliness of hands and face" and "Clinical decision-making about bed bath method." CONCLUSIONS: Overall, patients' bed bath preference was for soap and water, but disposable wet wipes were considered a convenient alternative and preferred in certain circumstances, for example, when a patient had pain or diarrhoea. Shared decision-making regarding bed bath method is recommended. Hands and face had specific requirements. RELEVANCE TO CLINICAL PRACTICE: Nursing staff should be aware that bedridden patients have varying preferences, and it is important to incorporate the patients' preferences in the development of standards, health policies and clinical guidelines for bed bath practices.