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BackgroundSelf-management strategies are regarded as highly prioritized in chronic obstructive pulmonary disease (COPD) treatment guidelines. However, individual and structural barriers lead to a staggering amount of people with COPD that are not offered support for such strategies, and new approaches are urgently needed to circumvent these barriers. A promising way of delivering health services such as support for self-management strategies is the use of eHealth tools. However, there is a lack of knowledge about the usage of, and factors affecting the use of, eHealth tools over time in people with COPD. ObjectiveThis study aimed, among people with COPD, to explore and describe the experiences of an eHealth tool over time and factors that might affect usage. MethodsThe eHealth tool included information on evidence-based self-management treatment for people with COPD, including texts, pictures, videos as well as interactive components such as a step registration function with automatized feedback. In addition to the latter, automated notifications of new content and pedometers were used as triggers to increase usage. After having access to the tool for 3 months, 16 individuals (12 women) with COPD were individually interviewed. At 12 months’ access to the tool, 7 (5 women) of the previous 16 individuals accepted a second individual interview. Data were analyzed using qualitative content analysis. User frequency was considered in the analysis, and participants were divided into users and nonusers/seldom users depending on the number of logins and minutes of usage per month. ResultsThree main categories, namely, ambiguous impact, basic conditions for usage, and approaching capability emerged from the analysis, which, together with their subcategories, reflect the participants’ experiences of using the eHealth tool. Nonusers/seldom users (median 1.5 logins and 1.78 minutes spent on the site per month) reported low motivation, a higher need for technical support, a negative view about the disease and self-management, and had problematic health literacy as measured by the Communicative and Critical Health Literacy Scale (median [range] 154 [5-2102]). Users (median 10 logins and 43 minutes per month) felt comfortable with information technology (IT) tools, had a positive view on triggers, and had sufficient health literacy (median [range] 5 [5-1400]). Benefits including behavior changes were mainly expressed after 12 months had passed and mainly among users. ConclusionsFindings of this study indicate that the level of motivation, comfortability with IT tools, and the level of health literacy seem to affect usage of an eHealth tool over time. Besides, regarding behavioral changes, gaining benefits from the eHealth tool seems reserved for the users and specifically after 12 months, thus suggesting that eHealth tools can be suitable media for supporting COPD-specific self-management skills, although not for everyone or at all times. These novel findings are of importance when designing new eHealth tools as well as when deciding on whether or not an eHealth tool might be appropriate to use if the goal is to support self-management among people with COPD. Trial RegistrationClinicalTrials.gov NCT02696187; https://clinicaltrials.gov/ct2/show/NCT02696187 International Registered Report Identifier (IRRID)RR2-10.1136/bmjopen-2017-016851

Objective/Aim: The aim was to compare the levels of physical activity, kinesiophobia, pain catastrophizing, body awareness, and depression in patients with Ankylosing Spondylitis (AS) and Rheumatoid Arthritis (RA) and to explore the associations between these outcomes and disease activity. Methods: Seventy‐eight patients with AS (n = 30) and RA (n = 48) were included. Outcomes were assessed using the International Physical Activity Questionnaire‐Short Form, the Tampa Scale of Kinesiophobia, the Pain Catastrophizing Scale, the Body Awareness Questionnaire, and the Beck Depression Inventory. Disease activity levels were determined using the Bath Ankylosing Spondylitis Disease Activity Index for AS and the Disease Activity Score 28 score for RA. Results: AS patients were younger, had a higher proportion of men, and were more physically active than RA patients (p < 0.05). Both groups exhibited high levels of kinesiophobia but low levels of pain catastrophizing, similar body awareness and mild depression scores. Moderate correlations (r ≥ 0.5) were observed between kinesiophobia and depression, body awareness and pain catastrophizing and depression, and pain catastrophizing and disease activity in AS patients. In RA patients, moderate correlations (r ≥ 0.5) were found between kinesiophobia and pain catastrophizing. Conclusion: Addressing physical activity, kinesiophobia, pain catastrophizing, body awareness, and depression is important in managing AS and RA patients. Notably, correlations among outcomes differed between groups, with more significant correlations in AS. Further studies are needed to explore these in greater detail. [ABSTRACT FROM AUTHOR]

Objective: The aim of this scoping review was to examine educational foot health interventions tested with patients and healthcare professionals, with the ultimate goal of improving the quality of foot healthcare by identifying effective educational interventions for foot health. Design: Scoping review. Method: Three electronic databases (Medline/PubMed, CINAHL and Embase) were searched from citations up to 31 March 2019 within the limits of English language at the title and abstract level to identify foot health interventions. In total, 36 full texts found out of 762 citations were included in the review. Studies were eligible for inclusion if they were empirical, research-based intervention studies in which educational interventions with foot health content were conducted with a sample of adult patients and/or healthcare professionals, and foot health outcomes were reported. Data were analysed by summarising and categorising the studies and interventions. Critical appraisal tools from the Joanna Briggs Institute were used to evaluate the quality of the reviewed studies. Results: The educational foot health interventions reviewed were delivered in multiple forms, most often including a lecture, and were conducted individually or in small groups targeting predominantly patients with diabetes. The main content of the interventions was foot self-care. The interventions had positive outcomes for foot health, foot care knowledge, foot care activities and lower limb functional ability. Conclusion: This review identified many educational foot health interventions focused mainly on patients with diabetes. All these interventions have the potential to promote foot health in patients, and their future use and development is recommended.

Objectives We aimed to investigate the efficacy of lifestyle interventions for the management of SSc. Methods We searched the MEDLINE, Embase, Web of Science and CINAHL databases in June 2021. We included studies conducted on five or more patients with SSc published between 1 January 2000 and the search date evaluating lifestyle interventions, excluding systematic reviews without meta-analyses. Critical appraisal was conducted using critical appraisal tools from the Joanna Briggs Institute. Thirty-six studies were included for full-text evaluation. Results A total of 17 studies evaluated the effect of physical exercise alone, whereas 14 studies evaluated educational interventions for mental health management, often with physical exercise as a central component. At an aggregated level, these studies support patient education and physical exercise for the improvement of physical function, in particular hand and mouth function. Studies on diet and nutrition were few (n  = 5) and pertained to gastrointestinal as well as anthropometric outcomes; these studies were insufficient to support any conclusions. Conclusion Physical exercise and patient education should be considered for improving physical function in patients with SSc. These interventions can be provided alongside pharmacotherapy, but there is no evidence supporting that they can be a substitute. Further research should aim at assessing the effects of reductions of harmful exposures, including tobacco smoking and alcohol, improving sleep and enhancing social relations, three hitherto underexplored facets of lifestyle in the context of SSc. [ABSTRACT FROM AUTHOR]

Students' expectations of their future profession may have an impact on their professional development. This study aimed to describe first and final year physiotherapy students' expectations of their future profession. A total of 96 respondents participated; 45 students in their first semester 2006, and 51 students in their final semester 2014. Individual written reflections were analyzed separately for each semester, using qualitative manifest inductive content analysis. The analysis resulted in six categories from each semester. The categories from the first semester were: 1) Professional and person-centered; 2) Promote health in a holistic way; 3) Competence makes the patient and therapist feel confident; 4) Focus on education and behavioral change; 5) Confirmed as a role model; and 6) The impact of previous experiences and an unknown situation. The categories from the final semester were: 1) Interaction and learning; 2) Confidence by competence; 3) Value the work environment and knowledge exchange; 4) Personal goals and strategies; 5) Specialist or generalist work; and 6) Work with public health in a global world. In the first semester, students described different work approaches, while students in the last semester described how approaches were to be used. Furthermore, students in their first semester referred more to previous experiences, while students in their final semester developed strategies to achieve their professional goals. These findings might contribute to guide students' in their continuous professional development based on their experiences and expectations. [ABSTRACT FROM AUTHOR]

Research evidence suggests that, individually, diet and physical activity are effective interventions for reducing levels of inflammation in inflammatory joint diseases (IJD), however little is known about their combined use. This systematic review and meta-analysis aimed to examine the effects and/or associations of combined diet and physical activity interventions in IJD, specifically rheumatoid arthritis (RA) and the spondyloarthropathies (SpA) (PROSPERO registration number: CRD42022370993). Ten out of 11 eligible studies examined RA patients. We found that a combination of diet/nutrition and physical activity/exercise improved Health Assessment Questionnaire score (standardized mean difference = −1.36, confidence interval (CI) = (−2.43)−(−0.30), I2 = 90%, Z = 2.5, p = 0.01), while surprisingly they increased erythrocyte sedimentation rate (mean difference = 0.20, CI = 0.09–0.31, I2 = 0%, Z = 3.45, p < 0.01). No effects were found on C-reactive protein or weight (p > 0.05) of RA patients. We did not find studies in other IJDs that provided sufficient data for a meta-analysis. The narrative data synthesis provided limited evidence to address our research question. No firm conclusions can be made as to whether the combination of diet/nutrition and physical activity/exercise affects inflammatory load in IJDs. The results of this study can only be used as a means of highlighting the low-quality evidence in this field of investigation and the need for further and better-quality research. [ABSTRACT FROM AUTHOR]

Background: Vascular dysfunction and its concomitant multi-organ involvement, including cardiac involvement, affects prognosis in systemic sclerosis (SSc) patients. Regular exercise has demonstrated to be able to improve vascular function in SSc. However, the effects of an exercise program on the heart and specifically in right ventricular (RV) morphology and function in SSc have yet to be explored. The study aimed to examine whether a 3-month combined exercise program can affect RV morphology and function in SSc patients. Methods: Twenty-eight SSc patients were randomly allocated to either the exercise training (ET) or the control (CON) group. Baseline and follow-up assessments consisted of a cardiopulmonary exercise test along with both a conventional and a two-dimensional speckle tracking echocardiography (2DSTE) focused on RV morphology and function. Following the baseline assessments, Group ET participated in a supervised combined exercise program for 12 weeks, while group CON received their usual care. Results: The ET group demonstrated increases in peak oxygen consumption by 25.1% (p < 0.001), global RV free wall longitudinal systolic strain by 6.69% (p < 0.03), RV free wall longitudinal systolic strain of the basal segment by 13.5% (p < 0.001), and global RV four-chamber longitudinal systolic strain by 6.76% (p < 0.03) following the exercise program. No differences were observed in group CON. Conclusions: Combined exercise improved cardiorespiratory efficiency and indices of RV systolic function, as assessed by the 2DSTE, in SSc patients. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The aim of the study was to explore the experiences of foot health and the factors that hinder or facilitate foot health self-care in patients with RA. A descriptive qualitative study design was used. Individual interviews were conducted with patients who had been diagnosed with RA (n = 20). The interview data were analysed using inductive content analysis. The participants highly valued their foot health. The factors that hindered their foot health included physical characteristics (such as the progression of RA), personal traits (such as lack of motivation), inequalities in access to professional foot care and problems with finding suitable shoes. The factors that facilitated their foot health included professional care, physical activity and practising foot self-care. Patients with RA value their foot health. It is important to identify the factors that hinder or facilitate this in order to support their rehabilitation and respond to their foot-health needs. Patients' foot health should be promoted, and equal access to professional foot care should be provided. Active foot self-care supported by professional health are facilitating factors for foot health. Maintaining and promoting physical activity is integral part of foot health. Regular assessments of foot health in patients with RA in addition to an evaluation of their footwear and education about caring for their own feet is needed. [ABSTRACT FROM AUTHOR]

Non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) is important and helpful for the patients, but it has not yet been standardized and therefore has been underused in clinical practice. Recently, a task force comprising rheumatologists, healthcare professionals and patient advocates convened and developed a set of four overarching principles and twelve recommendations which aim to provide guidance for the non-pharmacological management of patients with SLE and SSc. The work was conducted within the frame of the European Alliance of Associations for Rheumatology (EULAR). Along with these recommendations, the task force also provided research and educational agendas, the latter to support the implementation of non-pharmacological management of SLE and SSc. This editorial summarizes the overarching principles and recommendations. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to explore how disease and health-related quality of life (HRQOL) factors are associated with self-reported physical capacity in walking, jogging and running in systemic lupus erythematosus (SLE). Patients and methods: This cross-sectional study is part of an ongoing cohort research project which started in 2014. A total of 198 patients (21 males, 177 females; mean age: 51.5±16.1 years; range, 20 to 82 years) with SLE answered a question concerning physical capacity and the answers were categorized as low (can walk less than 2 km) and high (can jog and run at least 2 km) capacity. Additional measurements of disease activity (Systemic Lupus Activity Measure-Revised, SLAM-R), organ damage (Systemic Lupus International Collaborating Clinics-Damage Index, SLICC-DI), physical activity (International Physical Activity Questionnaire-Short Form, IPAQ-SF), exercise during the past year, Hospital Anxiety and Depression Scale (HADS), and HRQOL according to EuroQol five-dimension score and EuroQol visual analog scale (EQ-VAS) were included. The independent variables in the multiple logistic regression analysis were age, body mass index (BMI), disease duration, SLAM-R, SLICC-DI, IPAQ-SF category, sitting hours (IPAQ-SF), and exercise during the past year as well as HADS and EQ-VAS. Results: Patients that reported low physical capacity (n=120) were older (p<0.001), had longer disease duration (p<0.001), had more organ damage (p<0.001), reported that they were less physically active (p=0.003), exercised less during the past year (p=0.001), reported more pain/discomfort and depressive symptom (p<0.001) and had lower overall HRQOL (p<0.001) and mobility and usual activities than those that reported high capacity (n=78). The regression analysis showed that age (median =49 vs >49) (Exp) (B): 4.52 (95% confidence interval [CI]: 2.05 to 9.98) (p<0.001), disease duration (median =17 vs >17) Exp (B): 2.53 (95% CI: 1.15 to 5.60) (p=0.02), SLICC-DI (median <1 vs =1) Exp (B): 3.60 (95% CI: 1.48 to 8.73) (p=0.005), and EQ-VAS (median <72 vs =72) Exp (B): 4.63 (95% CI: 2.13 to 10.05) (p<0.001) were significant factors associated with physical capacity (Nagelkerke R Squared=0.46). Conclusion: Patients with low physical capacity were less physically active, exercised less and had more pain and depressive symptoms than those that reported a high capacity. However, only age, disease duration, organ damage and overall HRQOL were indicators of low physical capacity. In order to increase physical capacity in the management of SLE, it is important to address overall HRQOL. [ABSTRACT FROM AUTHOR]

Introduction: Exercise is emerging as an important part of the treatment in systemic sclerosis‐patients with no‐mild lung involvement. However, it has not been studied how patients experience physical activity and exercises. We thus explored and described experiences of physical activity/exercises in systemic sclerosis‐individuals. Method: Sixteen systemic sclerosis‐patients were purposefully recruited to represent variation in gender, age, and lung disease. Semi‐structured individual interviews were performed, transcribed and analyzed with qualitative content analysis. Results: Three themes (categories) emerged: 1) Essential for life and health (An effective treatment, Reduces fear of deterioration, and Feeling healthy and satisfied with oneself); 2) Disease‐related hinders and other barriers (Disease consequences, Risk of worsening, and Non‐disease related barriers); and 3) Self‐care and/or support (Self‐confidence in physical activity/exercise, and, Education and support from healthcare and other). Conclusions: Physical activity/exercises were experienced as essential for life and health and as an effective treatment. It reduced fear of deterioration and made the participants feel healthy and satisfied with oneself. However, participants also experienced disease‐related barriers like shortness of breath and pain, and they expressed a risk of worsening. Participants felt confidence in their physical activity/exercises and expressed that education and support from healthcare could be facilitating. Our findings add new knowledge about how systemic sclerosis‐patients perceive physical activity/exercise and can contribute to the development of patient education and PA/exercise programs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: We aimed to map the physiotherapy practice in Sweden of clinical tests and patient-reported outcome measures in low-back pain (LBP), and to study advantages and barriers in using patient-reported outcome measures. Methods: An online survey was mailed to 4934 physiotherapists in primary health care in Sweden. Multiple choice questions investigated the use of clinical tests and patient-reported outcome measures in assessing patients with LBP. Open questions investigating the advantages and barriers to the use of patient-reported outcome measures were analyzed with content analysis. Results: The response rate was 25% (n = 1217). Clinical tests were used "always/often" by >60% of the participants, while most patient-reported outcome measures were used by <15%. Advantages in using patient-reported outcome measures were: the clinical reasoning process, to increase the quality of assessment, to get the patient's voice, education and motivation of patients, and communication with health professionals. Barriers were lack of time and knowledge, administrative aspects, the interaction between physiotherapist and patient and, the applicability and validity of the patient-reported outcome measures. Conclusion: Our findings show that physiotherapists working in primary health care use clinical testing in LBP to a great extent, while various patient-reported outcome measures are used to a low-to-very-low extent. Several barriers to the use of patient-reported outcome measures were reported such as time, knowledge, and administrative issues, while important findings on advantages were to enhance the clinical reasoning process and to educate and motivate the patient. Barriers might be changed through education or organizational change-work. To enhance the use of patient-reported outcome measures and thus person-centered care in low-back pain, recommendation, and education on various patient-reported outcome measures need to be advocated. To increase the effects of rehabilitation in low-back pain, yellow flags, and other factors need to be taken into the consideration in the assessment which means the use of patient-reported outcome measures in addition to clinical testing. The use of patient-reported outcome measures is an advantage in the clinical reasoning process to enhance the quality of assessment and to educate and motivate the patient. Barriers to use patient-reported outcome measures are mainly lack of time and knowledge, and administrative aspects. Through education or organizational change-work, barriers to the use of patient-reported outcome measures might be changed. [ABSTRACT FROM AUTHOR]

Objective: To systematically and comprehensively document the effectiveness of nonpharmacologic interventions on physical functioning and psychological well-being in patients with systemic sclerosis (SSc).Methods: Multiple electronic databases were searched for studies on the effectiveness of nonpharmacologic interventions in SSc. Randomized clinical trials (RCTs), controlled clinical trials (CCTs), and observational designs (ODs) with ≥10 participants were included. Two reviewers independently assessed methodologic quality using the Downs and Black checklist.Results: Twenty-three studies (9 RCTs, 4 CCTs, and 10 ODs) were included. Studies assessing comparable interventions were grouped, resulting in data for 16 different interventions. The total number of patients included per study ranged from 10 to 53. Seventeen different outcome domains were assessed, with hand function, limitations in activities, and quality of life being assessed most frequently. Three studies, all RCTs, were rated as high quality. These RCTs reported that 1) a multifaceted oral health intervention improves mouth hygiene, and additional orofacial exercises did not improve mouth opening, 2) a multidisciplinary team-care program improves limitations in activities, mouth opening, and hand grip strength, and 3) manual lymph drainage improves hand function, limitations in activities, and quality of life.Conclusion: The body of knowledge regarding nonpharmacologic care in SSc is very limited due to the wide variety in studied interventions and outcomes in the relatively uncommon but highly disabling disease. To structure and focus future research, an international consensus should be established to prioritize primary targets for nonpharmacologic treatment and the content of interventions and to agree on a core set of outcome measures. [ABSTRACT FROM AUTHOR]

Introduction Patients with systemic sclerosis (SSc) experience reduced exercise capacity and muscle strength compared with healthy subjects. There are also indications of reduced levels of physical activity. Objective To present the current knowledge of physical exercise in SSc. Results Most studies presently available [three case studies, one single subject experimental design, one study comparing patients with healthy controls, one quasi experimental design (pre-post), two clinical trials and two random controlled trials] have included small samples of patients, mostly composed of patients with and without pulmonary involvement. It seems that patients with SSc without pulmonary involvement are able to perform and benefit from aerobic exercises of at least moderate intensity. Exercise tolerance, aerobic capacity, walking distance, muscle strength and muscle function as well as health-related quality of life (HRQL) have been found to be improved after participation in programmes including aerobic exercise and aerobic exercise combined with resistance exercises. Improvements seem to be only partially retained at follow up. Patients with pulmonary involvement may also experience improved muscle strength, physical and aerobic capacity, as well as HRQL following exercise. Conclusions Patients with SSc without pulmonary involvement can be recommended to be as physically active as the general population. Patients with mild pulmonary involvement can be recommended to be physically active by engaging in exercises of moderate intensity and to participate in moderate-load resistance exercises. Health professionals should inform patients with SSc about the importance of physical activity and avoidance of a sedentary lifestyle. [ABSTRACT FROM AUTHOR]

The aim was to test aspects of reliability and validity of a Swedish version of the Self-Efficacy for Exercise Scale (SEE-SV) for older people. Floor and ceiling effects, item-total correlation, internal consistency, test--retest reliability, content and construct validity were tested on 39 older people, mean age 72 years (SD 3.3). Content validity was also tested on five physical therapists. The results showed no floor and ceiling effects. The ICC for the total score was 0.79 (95% CI 0.61-0.89). The median weighted kappa coefficients square for the individual items was 0.63. Item-to-total correlation varied between 0.64 and 0.86 and Cronbach's Alpha for all items was >0.92. The correlations between SEE-SV and the SF-36 Mental Health and Bodily Pain subscales were rs = 0.50 and rs = 0.30 (ns), respectively. The correlation between SEE-SV and self-assessed physical activity was rs = 0.13 (ns). Eighty-nine percent responded that the items were relevant and 92% that no item should be excluded. All physical therapists considered the items relevant, but the written instructions could be improved. In conclusion, SEE-SV has good item-to-total correlation, satisfactory internal consistence and substantial test--retest reliability. Our results show satisfactory content validity; however, studies are needed to further evaluate construct validity and to evaluate other aspects such as predicitve validity and responsiveness. [ABSTRACT FROM AUTHOR]

Objectives The authors aim to develop European League Against Rheumatism recommendations for the role of the nurse in the management of patients with chronic inflammatory arthritis, to identify a research agenda and to determine an educational agenda. Methods A task force made up of a multidisciplinary expert panel including nurses, rheumatologists, occupational therapist, physiotherapist, psychologist, epidemiologist and patient representatives, representing 14 European countries, carried out the development of the recommendations, following the European League Against Rheumatism standardised operating procedures. The task force met twice. In the first meeting, the aims of the task force were defined, and eight research questions were developed. This was followed by a comprehensive, systematic literature search. In the second meeting, the results from the literature review were presented to the task force that subsequently formulated the recommendations, research agenda and educational agenda. Results In total, 10 recommendations were formulated. Seven recommendations covered the contribution of nurses to care and management: education, satisfaction with care, access to care, disease management, psychosocial support, self-management and efficiency of care. Three recommendations focused on professional support for nurses: availability of guidelines or protocols, access to education and encouragement to undertake extended roles. The strength of the recommendations varied from A to C, dependent on the category of evidence (1A-3), and a high level of agreement was achieved. Additionally, the task force agreed upon 10 topics for future research and an educational agenda. Conclusion 10 recommendations for the role of the nurse in the management of chronic inflammatory arthritis were developed using a combination of evidence-based and expert consensus approach. [ABSTRACT FROM AUTHOR]

Objective: To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc)., Methods: A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the recommendations, statements were formulated, discussed during online meetings and graded based on risk of bias assessment, level of evidence (LoE) and strength of recommendation (SoR; scale A-D, A comprising consistent LoE 1 studies, D comprising LoE 4 or inconsistent studies), following the European Alliance of Associations for Rheumatology standard operating procedure. Level of agreement (LoA; scale 0-10, 0 denoting complete disagreement, 10 denoting complete agreement) was determined for each statement through online voting., Results: Four overarching principles and 12 recommendations were developed. These concerned common and disease-specific aspects of non-pharmacological management. SoR ranged from A to D. The mean LoA with the overarching principles and recommendations ranged from 8.4 to 9.7. Briefly, non-pharmacological management of SLE and SSc should be tailored, person-centred and participatory. It is not intended to preclude but rather complement pharmacotherapy. Patients should be offered education and support for physical exercise, smoking cessation and avoidance of cold exposure. Photoprotection and psychosocial interventions are important for SLE patients, while mouth and hand exercises are important in SSc., Conclusions: The recommendations will guide healthcare professionals and patients towards a holistic and personalised management of SLE and SSc. Research and educational agendas were developed to address needs towards a higher evidence level, enhancement of clinician-patient communication and improved outcomes., Competing Interests: Competing interests: IP has received research funding and/or honoraria from Amgen, AstraZeneca, Aurinia, Elli Lilly, Gilead, GlaxoSmithKline, Janssen, Novartis, Otsuka, and Roche. LA has received research funding and/or consultancies from Alexion, Alpine, Amgen, AstraZeneca, Abbvie, Biogen, BMS, Boehringer-Ingelheim, GlaxoSmithKline, Janssen-Cilag, Kezar, Elli Lilly and Company, Medac, Novartis, Pfizer, Roche-Chugaï, Sêmeia, and Union Chimique Belge (UCB). OD has/had consultancy relationship with and/or has received research funding from and/or has served as a speaker for 4P-Pharma, Abbvie, Acceleron, Alcimed, Amgen, AnaMar, Arxx, AstraZeneca, Baecon, Blade, Bayer, Boehringer Ingelheim, Corbus, CSL Behring, 4P Science, Galapagos, Glenmark, Horizon, Inventiva, Janssen, Kymera, Lupin, Medscape, Miltenyi Biotec, Mitsubishi Tanabe, MSD, Novartis, Prometheus, Redxpharma, Roivant, Sanofi, and Topadur. AK has/had consultancy relationship with and/or has received research funding from Boehringer Ingelheim, Pfizer, Swiss Nursing Science Foundation, Swiss League Against Rheumatism, and University of Basel. MN reports research grants from BMS, Vifor Pharma and Sanofi paid to his institution, speaking fees from CCIS The Conference Company and Eli Lilly, all outside the submitted work. JEV reports speaker fees from Eli Lilly, and Galapagos. RW has received honoraria from Galapagos, Celltrion, Gilead Sciences, and Union Chimique Belge (UCB). The other authors declare that they have no conflicts of interest., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Systemic sclerosis (SSc) can lead to visible changes in appearance which could generate concerns among patients. Thus, valid questionnaires that capture these concerns are valuable to identify and communicate appearance concerns., Objective: To determine aspects of the validity and reliability of the Swedish version of the Satisfaction with Appearance scale for individuals with SSc (SWAP-Swe in SSc)., Methods: Content validity was assessed by interviews. In a cross-sectional design, construct validity was evaluated by comparing the self-reported questionnaire SWAP-Swe in SSc to the Scleroderma Health Assessment Questionnaire (SSc HAQ), Patient Health Questionnaire-8 (PHQ-8), RAND-36, modified Rodnan skin score (mRSS), disease duration and age using Spearman's rank correlations ( r s ). Internal consistency was evaluated by Cronbach's alpha coefficient and corrected item-to-total correlations. Test-retest reliability was investigated using the intraclass correlation coefficient (ICC)., Results: Eleven patients and 10 health professionals participated in the assessment of content validity. For the other aspects of validity and reliability 134 patients (median age 62 years, women 81%, limited cutaneous SSc 75%) participated. Overall, the content validity was satisfactory. The SWAP-Swe in SSc correlated with SSc HAQ (HAQ-DI r s  = 0.50, visual analogue scales r s  = 0.24-0.41), PHQ-8 ( r s  = 0.46), RAND-36 ( r s  = -0.21 to -0.47), mRSS ( r s  = 0.28), disease duration ( r s  = -0.01) and age ( r s  = -0.15). The Cronbach's alpha coefficient was 0.92, corrected item-to-total correlations ⩾ 0.45 and the ICC 0.82., Conclusion: The SWAP-Swe in SSc showed satisfactory content validity, sufficient and good internal consistency and sufficient test-retest reliability. It was more strongly associated with self-reported questionnaires than with physician-assessed skin involvement and age, indicating that appearance concerns in SSc seem to be multidimensional as earlier reported. Our study contributes with a thorough investigation of validity and reliability including aspects that have not been investigated before. However, evaluation of more validity aspects of the SWAP-Swe in SSc is suggested., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s) 2022.)