Your browser doesn't support javascript.
loading
: 20 | 50 | 100
1 - 20 de 49
1.
Rheumatol Adv Pract ; 8(2): rkae037, 2024.
Article En | MEDLINE | ID: mdl-38590950

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.

2.
Rheumatol Int ; 44(5): 765-778, 2024 May.
Article En | MEDLINE | ID: mdl-38451302

We performed a systematic review to explore existing evidence regarding the efficacy of lifestyle interventions for the management of systemic lupus erythematosus (SLE). The search was conducted on the 22nd of June 2021 for publications between 1st of January 2000 and the date of search. Additional articles within the aforementioned timeframe and until December 2023 were added by hand searching. Databases utilized were Medline, Embase, Web of Science, and Cinahl. Lifestyle interventions were defined as any intervention encompassing one or more of the following: physical exercise, diet and nutrition, mental health, harmful exposures, sleep, and social relations. The Joanna Briggs Institute critical appraisal tools were used for risk of bias assessment. The search yielded 11,274 unique records, we assessed the full text of 199 records, and finally included 102 studies. Overall, the quality of the evidence is limited, and there were multiple sources of heterogeneity. The two domains most extensively researched were mental health (40 records) and physical exercise (39 records). Psychological interventions had a positive effect on depressive symptoms, anxiety, and health-related quality of life (HRQoL), whereas physical exercise improved fatigue, depressive symptoms, aerobic capacity, and physical functioning. Studies on diet and nutrition (15 records) support that low fat intake and Mediterranean diet may be beneficial for reducing cardiovascular risk, but large interventional studies are lacking. Studies on harmful exposures (7 records) support photoprotection and use of sunscreen. While studies imply benefits regarding disease burden and drug efficacy in non-smokers and regarding HRQoL in normal-weight patients, more survey is needed on tobacco smoking and alcohol consumption, as well as weight control strategies. Studies on social relations (1 record) and sleep (no records) were sparse or non-existent. In conclusion, psychosocial interventions are viable for managing depressive symptoms, and exercise appears essential for reducing fatigue and improving aerobic capacity and physical function. Photoprotection should be recommended to all patients. Lifestyle interventions should be considered a complement, not a substitute, to pharmacotherapy.


Lupus Erythematosus, Systemic , Quality of Life , Humans , Life Style , Exercise , Lupus Erythematosus, Systemic/therapy , Lupus Erythematosus, Systemic/psychology , Fatigue
3.
ARP Rheumatol ; 2024 Feb 18.
Article En | MEDLINE | ID: mdl-38368546

In inflammatory rheumatic diseases, including, systemic sclerosis (SSc) there is growing evidence that treatment strategies should not only target disease control in terms of clinical features and laboratory tests but consider distinct interventions to mitigate all domains of perceived disease impact. The results of a multicentric work based on data from the Rheumatic Diseases Portuguese Registry (Reuma.pt)/Scleroderma indicated that the optimization of outcomes for patients with SSc would in all probability require assessment of the needs of individual patients and consider adjunctive interventions in clinical practice to mitigate all significantly affected domains of disease impact. Recently, in June 2023, a task force under the auspices of EULAR, comprising rheumatologists, health professionals and patient advocates published four overarching principles and twelve recommendations for the non-pharmacological management of people living with SSc and systemic lupus erythematosus (SLE).

4.
BMC Musculoskelet Disord ; 24(1): 806, 2023 Oct 12.
Article En | MEDLINE | ID: mdl-37828488

BACKGROUND: To date, no consensus exists as to whether one exercise type is more effective than another in chronic neck pain. This systematic review and meta-analysis of systematic reviews aimed to summarize the literature on the effect of various exercise types used in chronic neck pain and to assess the certainty of the evidence. METHODS: We searched the databases Ovid MEDLINE, Embase, Cochrane Library, SportDiscus, and Web of Science (Core Collection) for systematic reviews and meta-analyses on adults between 18 and 70 years with chronic neck pain lasting ≥ 12 weeks which investigated the effects of exercises on pain and disability. The included reviews were grouped into motor control exercise (MCE), Pilates exercises, resistance training, traditional Chinese exercise (TCE), and yoga. Study quality was assessed with AMSTAR-2 and the level of certainty for the effects of the exercise through GRADE. A narrative analysis of the results was performed and in addition, meta-analyses when feasible. RESULTS: Our database search resulted in 1,794 systematic reviews. We included 25 systematic reviews and meta-analyses including 17,321 participants (overlap not accounted for). The quality of the included reviews ranged from critically low to low (n = 13) to moderate to high (n = 12). We found low to high certainty of evidence that MCE, Pilates exercises, resistance training, TCE, and yoga have short-term positive effects on pain and that all exercise types except resistance training, show positive effects on disability compared to non-exercise controls. We found low to moderate certainty of evidence for conflicting results on pain and disability when the exercise types were compared to other exercise interventions in the short-term as well as in intermediate/long-term apart for yoga, as no long-term results were available. CONCLUSION: Overall, our findings show low to high certainty of evidence for positive effects on pain and disability of the various exercise types used in chronic neck pain compared to non-exercise interventions, at least in the short-term. Based on our results, no optimal exercise intervention for patients with chronic neck pain can be recommended, since no large differences between the exercise types were shown here. Because the quality of the included systematic reviews varied greatly, future systematic reviews need to increase their methodological quality. TRIAL REGISTRATION: Prospero CRD42022336014.


Chronic Pain , Yoga , Adult , Humans , Chronic Pain/diagnosis , Chronic Pain/therapy , Exercise , Exercise Therapy/methods , Neck Pain/diagnosis , Neck Pain/therapy , Quality of Life , Systematic Reviews as Topic
5.
RMD Open ; 9(3)2023 08.
Article En | MEDLINE | ID: mdl-37532469

Through this systematic literature review, we assembled evidence to inform the EULAR recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). We screened articles published between January 2000 and June 2021. Studies selected for data extraction (118 for SLE and 92 for SSc) were thematically categorised by the character of their intervention. Of 208 articles included, 51 were classified as robust in critical appraisal. Physical activity was the most studied management strategy and was found to be efficacious in both diseases. Patient education and self-management also constituted widely studied topics. Many studies on SLE found psychological interventions to improve quality of life. Studies on SSc found phototherapy and laser treatment to improve cutaneous disease manifestations. In summary, non-pharmacological management of SLE and SSc encompasses a wide range of interventions, which can be combined and provided either with or without adjunct pharmacological treatment but should not aim to substitute the latter when this is deemed required. While some management strategies i.e., physical exercise and patient education, are already established in current clinical practice in several centres, others e.g., phototherapy and laser treatment, show both feasibility and efficacy, yet require testing in more rigorous trials than those hitherto conducted.


Lupus Erythematosus, Systemic , Scleroderma, Systemic , Humans , Quality of Life , Scleroderma, Systemic/diagnosis , Scleroderma, Systemic/therapy , Lupus Erythematosus, Systemic/therapy
6.
Ann Rheum Dis ; 2023 Aug 23.
Article En | MEDLINE | ID: mdl-37433575

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.

7.
Healthcare (Basel) ; 11(10)2023 May 15.
Article En | MEDLINE | ID: mdl-37239713

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.

8.
RMD Open ; 9(2)2023 05.
Article En | MEDLINE | ID: mdl-37230762

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.


Health Personnel , Rheumatology , Health Personnel/education , Rheumatology/education , Education, Continuing , Europe , Surveys and Questionnaires , Humans , Male , Female , Curriculum , Pediatrics/education , Education, Distance
9.
Life (Basel) ; 13(2)2023 Feb 15.
Article En | MEDLINE | ID: mdl-36836902

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.

10.
J Scleroderma Relat Disord ; 8(1): 53-63, 2023 Feb.
Article En | MEDLINE | ID: mdl-36743814

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 (rs ). 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 rs = 0.50, visual analogue scales rs = 0.24-0.41), PHQ-8 (rs = 0.46), RAND-36 (rs = -0.21 to -0.47), mRSS (rs = 0.28), disease duration (rs = -0.01) and age (rs = -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.

11.
Physiother Theory Pract ; 39(11): 2366-2376, 2023 Nov 02.
Article En | MEDLINE | ID: mdl-35583494

BACKGROUND AND AIM: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.


Health Promotion , Motivation , Humans , Learning , Students , Physical Therapy Modalities
12.
Trials ; 23(1): 962, 2022 Nov 28.
Article En | MEDLINE | ID: mdl-36443836

BACKGROUND: Pain, related to Raynaud's phenomenon or digital ulceration, has been identified as very prevalent and debilitating symptoms of systemic sclerosis (SSc), both significantly affecting patients' quality of life (QoL). Pharmacological therapeutic strategies were found not to be sufficiently effective in the management of SSc-induced pain and fatigue, and evidence for exercise is scarce. As yet, the effects of a long-term, tailored exercise programme on pain and fatigue in patients with SSc have not been explored. In addition to pain and fatigue, this study aims to evaluate the effects of exercise on QoL, physical fitness, functional capacity, and vascular structure in people with SSc (PwSSc). METHODS: This will be a multicentre (n = 6) randomised controlled clinical trial to assess the effect of a previously established, supervised 12-week combined exercise programme on pain and fatigue as compared to no exercise in PwSSc. The study will recruit 180 patients with SSc that will be allocated randomly to two groups. Group A will perform the exercise programme parallel to standard usual care and group B will receive usual care alone. Patients in the exercise group will undertake two, 45-min sessions each week consisting of 30-min high-intensity interval training (HIIT) (30-s 100% peak power output/30-s passive recovery) on an arm crank ergometer and 15 min of upper body circuit resistance training. Patients will be assessed before as well as at 3 and 6 months following randomisation. Primary outcomes of the study will be pain and fatigue assessed via questionnaires. Secondary outcomes include quality of life, structure of digital microvasculature, body composition, physical fitness, and functional capacity. DISCUSSION: Data from this multi-centre research clinical trial will primarily be used to establish the effectiveness of a combined exercise protocol to improve pain and fatigue in SSc. In parallel, this study will be the first to explore the effects of long-term exercise on potential microvascular alterations assessed via NVC. Overall, this study will provide sufficient data to inform current clinical practice guidelines and may lead to an improvement of QoL for patients with SSc. TRIAL REGISTRATION: ClinicalTrials.gov NCT05234671. Registered on 14 January 2022.


Quality of Life , Scleroderma, Systemic , Humans , Fatigue/diagnosis , Fatigue/etiology , Fatigue/therapy , Pain/diagnosis , Pain/etiology , Scleroderma, Systemic/complications , Scleroderma, Systemic/diagnosis , Scleroderma, Systemic/therapy , Exercise Therapy , Randomized Controlled Trials as Topic , Multicenter Studies as Topic
13.
Int J Chron Obstruct Pulmon Dis ; 17: 2461-2469, 2022.
Article En | MEDLINE | ID: mdl-36217331

Background: Physical inactivity is strongly associated with worse prognosis in Chronic Obstructive Pulmonary Disease (COPD), and assessment of physical function is very important. The six minute walking test (6MWT) is an established test known to predict mortality in COPD, and 30 seconds chair stand test (30sCST) is a potential alternative test. The study aimed to investigate and compare the associations of 6MWT and 30sCSTs with mortality. Methods: Data on patient demographics, established mortality predictors and results from 6MWT and 30sCST were collected from 2016 to 2019 from 97 consecutively included patients with COPD. In August 2021, mortality data were retrieved from patient records. Correlation analysis of 6MWT and 30sCST was performed. The predictive abilities of 6MWT and 30sCST, respectively, were analyzed using Kaplan Meyer-curves and Cox regression with adjustment for sex, age, body mass index below 22 and comorbid cardiovascular disease. Results: A positive correlation between 6MWT and 30sCST was shown (r = 0.61, p < 0.0001). Independent associations with mortality were found for 6MWD 250-349 (HR (95% CI) 3.19 (1.12 to 9.10), p = 0.030) and 6MWD <250 (4.27 (1.69 to10.8), p = 0.002) compared with 6MWD ≥350 meters, and for 30sCST <4 (3.31 (1.03 to 10.6), p = 0.045) compared with 30sCST≥11 risings. When both 6MWT and 30sCST were included in the multivariable model, 6MWD 250-349 (3.09 (1.02 to 9.37), p = 0.046) and 6MWD <250 (3.57 (1.26 to 10.1), p = 0.016) compared with 6MWD ≥350 meters predicted mortality. Conclusion: 30sCST and 6MWT correlates moderately and are independently associated with mortality in patients with COPD. Although 6MWT is the best predictor of mortality, 30sCST may be used as an alternative to identify patients at risk.


Pulmonary Disease, Chronic Obstructive , Cohort Studies , Exercise Test/methods , Exercise Tolerance , Humans , Lung , Pulmonary Disease, Chronic Obstructive/diagnosis , Walk Test , Walking
14.
BMC Musculoskelet Disord ; 23(1): 801, 2022 Aug 22.
Article En | MEDLINE | ID: mdl-35996124

BACKGROUND: In chronic LBP (CLBP), guideline-endorsed treatment is to stay active, return to normal activity, and to exercise. Several reviews on various exercise types used in CLBP have been published. We aimed to identify systematic reviews of common exercise types used in CLBP, to appraise their quality, and to summarize and compare their effect on pain and disability. METHODS: We searched the databases OVID MEDLINE, EMBASE, COCHRANE LIBRARY, and WEB OF SCIENCE (Core collection) for systematic reviews and meta-analyses on adults between 18 and 70 years of age suffering from chronic or recurrent LBP for a period of at least 12 weeks, which investigated the effects of exercises on pain and disability. All searches were conducted without language restriction. The search was performed up until 2022-01-26. The included reviews were grouped into nine exercise types: aerobic training, aquatic exercises, motor control exercises (MCE), resistance training, Pilates, sling exercises, traditional Chinese exercises (TCE), walking, and yoga. The study quality was assessed with AMSTAR-2. For each exercise type, a narrative analysis was performed, and the level of evidence for the effects of exercise was assessed through GRADE. RESULTS: Our database search resulted in 3,475 systematic reviews. Out of the 253 full texts that were screened, we included 45 systematic reviews and meta-analyses. The quality of the included reviews ranged from high to critically low. Due to large heterogeneity, no meta-analyses were performed. We found low-to-moderate evidence of mainly short-term and small beneficial effects on pain and disability for MCE, Pilates, resistance training, TCE, and yoga compared to no or minimal intervention. CONCLUSIONS: Our findings show that the effect of various exercise types used in CLBP on pain and disability varies with no major difference between exercise types. Many of the included systematic reviews were of low-to-moderate quality and based on randomized controlled trials with high risk of bias. The conflicting results seen, undermine the certainty of the results leading to very-low-to-moderate quality of evidence for our results. Future systematic reviews should be of higher quality to minimize waste of resources. TRIAL REGISTRATION: PROSPERO: Reg no 190409 Registration date 01AUG 2020.


Chronic Pain , Low Back Pain , Yoga , Adult , Chronic Pain/diagnosis , Chronic Pain/therapy , Exercise , Exercise Therapy/methods , Humans , Infant , Low Back Pain/diagnosis , Low Back Pain/therapy , Systematic Reviews as Topic
15.
Ann Rheum Dis ; 81(10): 1348-1357, 2022 10.
Article En | MEDLINE | ID: mdl-35676076

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.


Arthritis , Physical Therapists , Rheumatology , Arthritis/therapy , Female , Humans , Male , Patient Education as Topic , Rheumatologists
16.
RMD Open ; 8(1)2022 04.
Article En | MEDLINE | ID: mdl-35459751

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.


Arthritis , Patient Education as Topic , Arthritis/therapy , Female , Health Personnel , Humans , Male , Middle Aged , Patient Preference , Surveys and Questionnaires
17.
Disabil Rehabil ; 44(1): 88-95, 2022 Jan.
Article En | MEDLINE | ID: mdl-32352848

PURPOSE: 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. MATERIALS AND METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.Implications for rehabilitationActive 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.


Arthritis, Rheumatoid , Foot Diseases , Arthritis, Rheumatoid/rehabilitation , Humans , Qualitative Research , Self Care , Shoes
18.
Arthritis Care Res (Hoboken) ; 74(1): 31-43, 2022 01.
Article En | MEDLINE | ID: mdl-34632707

OBJECTIVE: Although physical activity is an evidence-based intervention that reduces disease-related symptoms and comorbidity in rheumatoid arthritis (RA), the effect of physical activity on self-reported function and quality of life (QoL) has not yet been analyzed. The present study synthesizes the evidence for the effectiveness of physical activity on QoL and self-reported function in adults with RA, spondyloarthritis (SpA), and psoriatic arthritis (PsA). METHODS: The databases PubMed, Embase, CINAHL, and Cochrane Central Register of Controlled Trials (CENTRAL) were searched to identify relevant randomized controlled trials (RCTs). Screening, risk of bias assessment (using the RoB 2.0 tool), and data extraction were independently performed by 2 or more of the authors. Meta-analyses were conducted with a random-effects model. RESULTS: Systematic review included 55 RCTs, and meta-analysis included 37 RCTs. Of the 55 studies included, 76%, 20%, and 4% were designed to investigate RA, SpA, and PsA, respectively. In the RA studies, effects of physical activity on QoL and function were found compared to the group of inactive controls; no effects were found compared to the group of active controls. In the SpA studies, the effects of physical activity on QoL were in favor of the control group. Effects of physical activity on function were found compared to the group of inactive controls and sustained in fatigue and pain when compared to the group of active controls. In the PsA studies, no effects on QoL were found, but effects on function were noted when compared to the group of inactive controls. The effect size was below 0.30 in the majority of the comparisons. CONCLUSION: Physical activity may improve QoL and self-reported function in individuals with RA, SpA, and PsA. However, larger trials are needed, especially in SpA and PsA.


Arthritis , Exercise , Quality of Life , Humans , Self Report
19.
Front Med (Lausanne) ; 8: 770422, 2021.
Article En | MEDLINE | ID: mdl-34869487

Objective: To identify a spectrum of perspectives on functioning and health of patients with primary Sjögren's syndrome (pSS) from the five European countries in order to reveal commonalities and insights in their experiences. Methods: A multicenter focus group study on the patients with pSS about their perspectives of functioning and health was performed. Focus groups were chaired by trained moderators based on an interview guide, audiotaped, and transcribed. After conducting a meaning condensation analysis of each focus group, we subsequently combined the extracted concepts from each country and mapped them to the International Classification of Functioning, Disability and Health (ICF). Results: Fifty-one patients with pSS participated in 12 focus groups. We identified a total of 82 concepts meaningful to people with pSS. Of these, 55 (67%) were mentioned by the patients with pSS in at least four of five countries and 36 (44%) emerged in all the five countries. Most concepts were assigned to the ICF components activities and participation (n = 25, 30%), followed by 22 concepts (27%) that were considered to be not definable or not covered by the ICF; 15 concepts (18%) linked to body structures and functions. Participants reported several limitations in the daily life due to a mismatch between the capabilities of the person, the demands of the environment and the requirements of the activities. Conclusion: Concepts that emerged in all the five non-English speaking countries may be used to guide the development and adaption of the patient-reported outcome measures and to enhance the provision of treatment options based on the aspects meaningful to patients with pSS in clinical routine.

20.
RMD Open ; 7(2)2021 07.
Article En | MEDLINE | ID: mdl-34326205

OBJECTIVE: Non-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding content, feasibility and potential suitability in an e-health setting. METHODS: A literature search was performed in eight different databases in July 2020. The intervention's content was extracted using the 'Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide'. A Sankey diagram and descriptive statistics were used to analyse the data and illustrate the relationships between the interventions. RESULTS: Of 8198 identified records, 119 papers were eligible. One hundred and four of them (87.4%) were conducted between 2000 and 2020, mainly in the USA (SLE n=24 (21.2%), SSc n=16 (14.2%)), Brazil (SLE n=8 (7.1%), SSc n=5 (4.4%)) and Italy (SLE n=0 (0%), SSc n=12 (10.6%)). Fifty-two studies (SLE n=24 (21.2%), SSc n=28 (24.8%)) used multicomponent interventions. The single interventions were physical exercises (SLE n=16 (14.2%), SSc n=17 (15.0%)), coaching/counselling (SLE n=11 (18.0%), SSc n=0 (0%)) and education (SLE n=2 (1.8%), SSc n=3 (2.7%)). Primary outcomes focused on physical function (SLE n=1 (0.9%), SSc n=15 (13.3%)), mouth opening in SSc (n=4 (5.9%)) and physical capacity (SLE n=2 (1.8%), SSc n=1 (0.9%)). No interventions for mixed connective tissue disease were found. CONCLUSION: There was a great variety in the intervention's content due to differences in body structure, activity limitations and participation restrictions in SLE and SSc. These results highlight the need for personalised, multicomponent, non-pharmacological interventions, which could be delivered as e-health interventions.


Connective Tissue Diseases , Lupus Erythematosus, Systemic , Scleroderma, Systemic , Telemedicine , Connective Tissue Diseases/therapy , Humans , Lupus Erythematosus, Systemic/therapy , Scleroderma, Systemic/therapy
...