Effects of a mindfulness-based and acceptance-based group programme followed by physical activity for patients with fibromyalgia: a randomised controlled trial

Introduction: Non-pharmacological approaches are recommended as first-line treatment for patients with fibromyalgia. This randomised controlled trial investigated the effects of a multicomponent rehabilitation programme for patients with recently diagnosed fibromyalgia in primary and secondary healthcare. Methods: Patients with widespread pain ≥3 months were referred to rheumatologists for diagnostic clarification and assessment of study eligibility. Inclusion criteria were age 20–50 years, engaged in work or studies at present or during the past 2 years, and fibromyalgia diagnosed according to the American College of Rheumatology 2010 criteria. All eligible patients participated in a short patient education programme before inclusion and randomisation. The multicomponent programme, a 10-session mindfulness-based and acceptance-based group programme followed by 12 weeks of physical activity counselling was evaluated in comparison with treatment as usual, that is, no treatment or any other treatment of their choice. The primary outcome was the Patient Global Impression of Change (PGIC). Secondary outcomes were self-reported pain, fatigue, sleep quality, psychological distress, physical activity, health-related quality of life and work ability at 12-month follow-up. Results: In total, 170 patients were randomised, 1:1, intervention:control. Overall, the multicomponent rehabilitation programme was not more effective than treatment as usual; 13% in the intervention group and 8% in the control group reported clinically relevant improvement in PGIC (p=0.28). No statistically significant between-group differences were found in any diseaserelated secondary outcomes. There were significant between-group differences in patient’s tendency to be mindful (p=0.016) and perceived benefits of exercise (p=0.033) in favour of the intervention group. Conclusions: A multicomponent rehabilitation programme combining patient education with a mindfulness-based and acceptance-based group programme followed by physical activity counselling was not more effective than patient education and treatment as usual for patients with recently diagnosed fibromyalgia at 12-month follow-uppublishedVersio

The WebRA study: Opportunities and challenges in digital patient education from the perspective of patients with rheumatoid arthritis: A qualitative study

This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).Objective: To explore patients’ perceptions of digital patient education (PE), and how this contributes to self-management of rheumatoid arthritis (RA). Methods: Individual interviews based on ’interpretive description’ methodology. The patients were purposively selected from a randomized controlled trial that investigated the effects of digital PE. The analysis included a descriptive section, followed by the interpretation and extraction of the main messages. Results: Overall, participants had positive perceptions of the e-learning program. Advantages were flexibility, the possibility for repetition, entertainment, availability, and learning in familiar surroundings. Disadvantages were unmet relational support needs due to missing dialogue with health care providers (HCPs). For the majority, a need for insight into the condition led to an active approach to using e-learning. The e-learning program facilitated knowledge acquisition about RA, but relational support from HCPs and a positive attitude toward living with RA were also important for achieving self-management. Conclusion: Digital PE is useful for self-management support in RA, however different forms and combinations of PE must be offered in the future to accommodate various needs throughout the disease course. Practice implications: These results may inform future development and implementation of digital PE that adequately takes individual preferences for selfmanagement support into account.publishedVersio

Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC)

Background Chronic rheumatic diseases are painful conditions which are not entirely controllable and can place high emotional demands on individuals. Increasing evidence has shown that emotion regulation in terms of actively processing and expressing disease-related emotions are likely to promote positive adjustment in patients with chronic diseases. The Emotional Approach Coping Scale (EAC) measures active attempts to acknowledge, understand, and express emotions. Although tested in other clinical samples, the EAC has not been validated for patients with rheumatic diseases. This study evaluated the data quality, internal consistency reliability, validity and responsiveness of the Norwegian version of the EAC for this group of patients. Methods 220 patients with different rheumatic diseases were included in a cross-sectional study in which data quality and internal consistency were assessed. Construct validity was assessed through comparisons with the Brief Approach/Avoidance Coping Questionnaire (BACQ) and the General Health Questionnaire (GHQ-20). Responsiveness was tested in a longitudinal pretest-posttest study of two different coping interventions, the Vitality Training Program (VTP) and a Self-Management Program (SMP). Results The EAC had low levels of missing data. Results from principal component analysis supported two subscales, Emotional Expression and Emotional Processing, which had high Cronbach's alphas of 0.90 and 0.92, respectively. The EAC had correlations with approach-oriented items in the BACQ in the range 0.17-0.50. The EAC Expression scale had a significant negative correlation with the GHQ-20 of -0.13. As hypothesized, participation in the VTP significantly improved EAC scores, indicating responsiveness to change. Conclusion The EAC is an acceptable and valid instrument for measuring emotional processing and expression in patients with rheumatic diseases. The EAC scales were responsive to change in an intervention designed to promote emotion regulation. The instrument has not yet been tested for test-retest reliability, which is recommended in future studies

Christian Gérard, Régis Guillet, dirs, L’œuvre en mouvement. Pour une conscience de la méthode

L’œuvre en mouvement. Pour une conscience de la méthode retranscrit « l’œuvre d’une action interculturelle soutenue » au sein de laquelle Christian Gérard et Régis Guillet invitent à s’interroger sur la place de la « Méthode » dans les modes de fonctionnement au sein de la société. Les deux auteurs auxquels sont associés Aïchata Agha, Chafika Bannier, Rosine Hamblet-Cipe, Momar Seck, et Apollinaire Sibguet, conduisent une réflexion qu’ils qualifient comme portant sur « nous-mêmes et nous-même..

Implementation strategies to enhance the implementation of eHealth programs for patients with chronic illnesses: realist systematic review

Background: There is growing evidence of the positive effects of electronic health (eHealth) interventions for patients with chronic illness, but implementation of such interventions into practice is challenging. Implementation strategies that potentially impact implementation outcomes and implementation success have been identified. Which strategies are actually used in the implementation of eHealth interventions for patients with chronic illness and which ones are the most effective is unclear. Objective: This systematic realist review aimed to summarize evidence from empirical studies regarding (1) which implementation strategies are used when implementing eHealth interventions for patients with chronic illnesses living at home, (2) implementation outcomes, and (3) the relationship between implementation strategies, implementation outcomes, and degree of implementation success. Methods: A systematic literature search was performed in the electronic databases MEDLINE, Embase, PsycINFO, Scopus, Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library. Studies were included if they described implementation strategies used to support the integration of eHealth interventions into practice. Implementation strategies were categorized according to 9 categories defined by the Expert Recommendations for Implementing Change project: (1) engage consumers, (2) use evaluative and iterative strategies, (3) change infrastructure, (4) adapt and tailor to the context, (5) develop stakeholder interrelationships, (6) use financial strategies, (7) support clinicians, (8) provide interactive assistance, and (9) train and educate stakeholders. Implementation outcomes were extracted according to the implementation outcome framework by Proctor and colleagues: (1) acceptability, (2) adoption, (3) appropriateness, (4) cost, (5) feasibility, (6) fidelity, (7) penetration, and (8) sustainability. Implementation success was extracted according to the study authors’ own evaluation of implementation success in relation to the used implementation strategies. Results: The implementation strategies management support and engagement, internal and external facilitation, training, and audit and feedback were directly related to implementation success in several studies. No clear relationship was found between the number of implementation strategies used and implementation success. Conclusions: This is the first review examining implementation strategies, implementation outcomes, and implementation success of studies reporting the implementation of eHealth programs for patients with chronic illnesses living at home. The review indicates that internal and external facilitation, audit and feedback, management support, and training of clinicians are of importance for eHealth implementation. The review also points to the lack of eHealth studies that report implementation strategies in a comprehensive way and highlights the need to design robust studies focusing on implementation strategies in the future.publishedVersio

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

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

Cross-cultural validation of the Educational Needs Assessment Tool in RA in 7 European countries

<p>Abstract</p> <p>Background</p> <p>The Educational Needs Assessment Tool (the ENAT) is a 39-item patient questionnaire originally developed in the UK to assess educational needs of patients with rheumatoid arthritis (RA). The objective of this study was to assess the cross-cultural validity of the ENAT in 7 European countries.</p> <p>Methods</p> <p>The ENAT was translated into Dutch, Finnish, Norwegian, Portuguese, Spanish and Swedish versions by using Beaton's cross-cultural adaptation process, and was completed by a convenience sample of patients with RA in each country. The generated country-specific data were assessed for construct validity and were then pooled and assessed for cross-cultural invariance using Rasch analysis.</p> <p>Results</p> <p>Individual country-specific analysis showed adequate fit to the Rasch model after adjustment for local dependency within domains. When data from the different countries were pooled, the 39 items deviated significantly from Rasch model's expectations (X²= 977.055, DF = 351, p = 0.000, PSI = 0.976). Again, most items within domains were found to be locally dependent, significantly affecting the fit. Consequently each domain was treated as a unit (i.e. testlet) and the ENAT was re-analysed as a seven-testlet scale resulting into a good fit to the Rasch model (X²= 71.909; DF = 63; p = 0.207, PSI = 0.951). A test of strict unidimensionality confirmed that all domains contributed to measuring a single construct. Cross-cultural non-invariance was discounted by splitting domains for DIF maintaining an excellent fit to the Rasch model. This allowed calibration of the ENAT into an interval scale.</p> <p>Conclusion</p> <p>The ENAT is a simple tool, which is a valid measure of educational needs of people with RA. Adjustment for cross-cultural non-invariance is available if data from the 7 European countries are to be pooled or compared.</p

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 EULAR recommendations for patient education among rheumatology professionals across Europe and 3 Asian countries, and identify potential barriers and facilitators to their application.Methods: A parallel convergent mixed methods research 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 to 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 participants 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

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

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

Vitality Training - a group-based intervention for persons with rheumatic diseases : Experiences, methodological aspects and clinical effects

Background: During the last decades there has been a shift away from the traditional view of health care professionals as the only experts and providers of knowledge and the patients as passive recipients, to a more collaborative approach, recognizing the patient as an active agent in managing illness and own health care. Within the health care system, one has gained a broader understanding of the complex interaction between person and disease and realized that a narrow biomedical approach is inadequate. Although pharmacological treatment for patients with rheumatic diseases has developed remarkably, not all patients are eligible for the new medications, the disease process is still only partly controllable, and many patients need to make demanding lifestyle changes. There is therefore a need for nonpharmacological interventions that enhance individuals’ coping abilities and help them to adjust to living with a lifelong disease. The Vitality Training Programme (VTP) is a group intervention that aims at enhancing people’s health promoting resources, their capacity to engage in the process of everyday living and ability to live a meaningful and valued life. Rather than focusing on strategies to control or reduce symptoms, the VTP explicitly emphasises the importance of nonjudgemental attention to thoughts, feelings and bodily senses without attempting to avoid or change them. Beneficial effects have been documented in persons with chronic musculoskeletal pain, but the VTP has previously not been evaluated in persons with inflammatory rheumatic diseases. Aims: The main aims of this research project were: 1) to evaluate effects of the VTP on psychological wellbeing, coping and disease-related symptoms in patients with chronic rheumatic diseases, 2) to explore participants' VTP experiences, and 3) to test the measurement properties of an instrument to measure emotion-focused coping, the Emotional Approach Coping Scale (EAC), in Norwegian patients with rheumatic diseases. Materials and methods: First, persons with various inflammatory arthritides (IA) and fibromyalgia syndrome (FMS), who attended the VTP at six rheumatology departments, were included in a prospective pre – post-test study with one-year follow-up (n = 175). Participants in the first ten groups were also asked to take part in qualitative focus group interviews (n = 69). Second, the Emotional Approach Coping Scale (EAC) was translated to Norwegian and tested in three different samples, a consecutive sample of patients attending rheumatology clinics (n = 118), a sample of patients attending the VTP (n = 36), and a sample attending a self-management program at a rheumatology hospital (n = 66). All patients had confirmed rheumatologic diagnoses of at least 0.5 years duration. Validity was tested in a cross-sectional study including all three samples, whereas responsiveness was tested in the two intervention groups. Finally, persons with inflammatory rheumatic joint diseases were recruited to a randomised controlled trial and allocated to either the VTP (n = 36) or routine care control plus a CD with mindfulness-based home exercises (n = 35). Qualitative data, collected from the focus group interviews were analysed by a qualitative content approach (paper II). Quantitative data were collected by self-report questionnaires and analysed by a variety of statistical methods, including paired t-tests for within-group changes (papers I, and III), bivariate and multivariate regression analyses of predictions (paper I), principal component factor analysis and correlation statistics (paper III), and mixed models repeated measures analyses of between-group effects (paper IV). Effect sizes were estimated by standardised response mean (SRM) (paper I and III) and by Cohen’s d statistic (paper IV). Results: In the pre – post-test study, psychological distress, wellbeing, self-efficacy pain and symptoms and self-care ability were significantly improved in IA patients post-intervention, and the improvements were maintained at one-year follow-up (all p-values Conclusions and implications: This research project has illuminated how a processoriented group intervention that focuses on topics related to life rather than the disease, explicitly addresses disease-related emotions and combines mindfulness-based and creative exercises, can enhance emotional wellbeing and strengthen individuals' belief in their abilities to manage their symptoms. Beneficial health effects were documented in terms of reduced psychological distress and fatigue. The EAC was found to be a valid and responsive instrument for measuring emotion-focused coping in persons with rheumatic diseases. These results show that the VTP is a feasible intervention that should be considered as a beneficial complement to existing treatment for patients with inflammatory rheumatic diseases, particularly for people who experience heightened psychological distress and fatigue. Key-words: vitality, rheumatic diseases, psychological distress, fatigue, self-efficacy, coping, emotions, adjustment, mindfulness, qualitative research, repeated measurements, mixed models analysis