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

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

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

Livsstyrketreningskurs ved fibromyalgi: «Jeg er faktisk god nok som jeg er»

Bakgrunn: Fibromyalgi kjennetegnes ved utbredte muskelsmerter og utmattelse og kan medføre stor sykdomsbelastning, sykefravær og behov for helsetjenester. Behandlingstilbudet er begrenset, og mange opplever å bli møtt med liten forståelse. Livsstyrketrening (LST) er et gruppebasert kurs som kan styrke den enkelte til å håndtere livet med helseutfordringer, og slik bedre mestring og helse. Hensikt: Studien er en del av et større prosjekt som har til hensikt å bedre behandlingstilbudet til personer med bromyalgi. Hensikten med denne delstudien har vært å utforske erfaringer som personer med bromyalgi har med LST-kurs, og betydningen kurset har for deres hverdag. Metode: Vi gjennomførte en eksplorativ kvalitativ studie med individuelle intervjuer med seks personer, alle kvinner i alderen 20–50 år. Intervjuene ble gjennomført tre–re måneder etter LST-kurs. En semistrukturert intervjuguide ble benyttet. Malteruds tilnærming for systematisk tekstkondensering styrte analysen. Resultat: Kursets hadde betydning for deltakernes hverdag, og deltakerne vektla særlig hvor viktig det var å kjenne seg igjen i hverandres erfaringer og oppleve anerkjennelse i gruppen. Analyseprosessen resulterte i tre hovedkategorier: 1) Å forstå seg selv i lys av gruppen, 2) Kurset som arena for å lære å akseptere seg selv, og 3) Håndtering av hverdagens utfordringer. Konklusjon: Studien viser at LST-kurs kan bidra til at personer med bromyalgi lærer å forholde seg til seg selv og sykdommen på en mer ivaretakende og aksepterende måte. Dette handler om å endre forståelse, holdninger og handlinger overfor egen situasjon, noe som er særlig viktig ved en kompleks og belastende sykdom som bromyalgi. LST-kurs kan bidra til å ytte oppmerksomheten fra sykdom til helse, fra en kritisk til mer aksepterende holdning til seg selv og fra motløshet til håp og tro på egen mestringsevne. Deltakerne fortsatte prosessen også etter at kurset var slutt. Gruppetilhørigheten hadde stor betydning, særlig ved å møte anerkjennelse, gjenkjennelse og støtte.publishedVersio

Livsstyrketreningskurs ved fibromyalgi: «Jeg er faktisk god nok som jeg er»

Bakgrunn: Fibromyalgi kjennetegnes ved utbredte muskelsmerter og utmattelse og kan medføre stor sykdomsbelastning, sykefravær og behov for helsetjenester. Behandlingstilbudet er begrenset, og mange opplever å bli møtt med liten forståelse. Livsstyrketrening (LST) er et gruppebasert kurs som kan styrke den enkelte til å håndtere livet med helseutfordringer, og slik bedre mestring og helse. Hensikt: Studien er en del av et større prosjekt som har til hensikt å bedre behandlingstilbudet til personer med fibryomyalgi har med LST-kurs, og betydningen kurset har for deres hverdag. Metode: Vi gjennomførte en eksplorativ kvalitativ studie med individuelle intervjuer med seks personer, alle kvinner i alderen 20-50 år. Intervjuene ble gjennomført tre-fire måneder etter LST-kurs. En semistrukturert intervjuguide ble benyttet. Malteruds tilnærming for systematisk tekstkondensering styrte analysen. Resultat: Kurset hadde betydning for deltakernes hverdag, og deltakerne vektla særlig hvor viktig det var å kjenne seg igjen i hverandres erfaringer og oppleve anerkjennelse i gruppen. Analyseprosesssen resulterte i tre hovedkategorier: 1) Å forstå seg selv i lys av gruppen, 2) Kurset som arena for å lære å akseptere seg selv, og 3) Håndtering av hverdagens utfordringer. Konklusjon: Studien viser at LST-kurs kan bidra til at personer med fibromylagi lærer å forholde seg til seg selv og sykdommen på en mer ivaretakende og aksepterende måte. Dette handler om å endre forståelse, holdninger og handlinger overfor egen situasjon, noe som er særlig viktig ved en kompleks og belastende sykdom som fibromyalgi. LST-kurs kan bidra til å flytte oppmerksomheten fra sykdom til helse, fra en kritisk til mer aksepterende holdning til seg selv og fra motløshet til håp og tro på egen mestringsevne. Deltakerne fortsatte prosessen også etter at kurset var slutt. Gruppetilhørigheten hadde stor betydning, særlig ved å møte anerkjennelse, gjenkjennelse og støtte

Livsstyrketreningskurs ved fibromyalgi: «Jeg er faktisk god nok som jeg er»

Bakgrunn: Fibromyalgi kjennetegnes ved utbredte muskelsmerter og utmattelse og kan medføre stor sykdomsbelastning, sykefravær og behov for helsetjenester. Behandlingstilbudet er begrenset, og mange opplever å bli møtt med liten forståelse. Livsstyrketrening (LST) er et gruppebasert kurs som kan styrke den enkelte til å håndtere livet med helseutfordringer, og slik bedre mestring og helse. Hensikt: Studien er en del av et større prosjekt som har til hensikt å bedre behandlingstilbudet til personer med bromyalgi. Hensikten med denne delstudien har vært å utforske erfaringer som personer med bromyalgi har med LST-kurs, og betydningen kurset har for deres hverdag. Metode: Vi gjennomførte en eksplorativ kvalitativ studie med individuelle intervjuer med seks personer, alle kvinner i alderen 20–50 år. Intervjuene ble gjennomført tre–re måneder etter LST-kurs. En semistrukturert intervjuguide ble benyttet. Malteruds tilnærming for systematisk tekstkondensering styrte analysen. Resultat: Kursets hadde betydning for deltakernes hverdag, og deltakerne vektla særlig hvor viktig det var å kjenne seg igjen i hverandres erfaringer og oppleve anerkjennelse i gruppen. Analyseprosessen resulterte i tre hovedkategorier: 1) Å forstå seg selv i lys av gruppen, 2) Kurset som arena for å lære å akseptere seg selv, og 3) Håndtering av hverdagens utfordringer. Konklusjon: Studien viser at LST-kurs kan bidra til at personer med bromyalgi lærer å forholde seg til seg selv og sykdommen på en mer ivaretakende og aksepterende måte. Dette handler om å endre forståelse, holdninger og handlinger overfor egen situasjon, noe som er særlig viktig ved en kompleks og belastende sykdom som bromyalgi. LST-kurs kan bidra til å ytte oppmerksomheten fra sykdom til helse, fra en kritisk til mer aksepterende holdning til seg selv og fra motløshet til håp og tro på egen mestringsevne. Deltakerne fortsatte prosessen også etter at kurset var slutt. Gruppetilhørigheten hadde stor betydning, særlig ved å møte anerkjennelse, gjenkjennelse og støtte

Effects of a community-based multicomponent rehabilitation programme for patients with fibromyalgia: protocol for a randomised controlled trial

Introduction: People with fibromyalgia (FM) suffer from symptoms such as widespread pain, non-refreshing sleep, fatigue and reduced quality of life. Effects of pharmacological treatment are questionable and non-pharmacological treatments are recommended as first-line therapy. To date the majority of patients with FM in Norway are not offered any targeted treatment. The aim of this randomised controlled trial is to investigate the effects of a community-based multicomponent rehabilitation programme comprising an acceptance-based and mindfulness-based group intervention, the Vitality Training Programme (VTP), followed by tailored physical activity counselling. Materials and methods: General practitioners refer potential participants to a rheumatologist in specialist healthcare for diagnostic clarification and assessment of comorbidities. Inclusion criteria are widespread pain/FM ≥3 months, age 20–50 and work participation (minimum part-time) within the last 2 years. The intervention group attends the VTP comprising 10 weekly 4 hour group sessions plus a booster session after 6 months. Thereafter, they receive 12 weeks of individually tailored physical exercise counselled by physiotherapists at community-based Healthy Life Centers. The control group follows treatment as usual. The primary outcome is Patient Global Impression of Change. Secondary outcomes include self-reported pain, fatigue and sleep quality, psychological distress, mindfulness, health-related quality of life, physical activity, work ability and exercise beliefs and habits. To achieve a power of 80% and allow for 10% dropout, 70 participants are needed in each arm. All analyses will be conducted on intention-to-treat bases and measured as differences between groups at 12 months follow-up. Ethics and dissemination: The study is approved and granted by the Norwegian South-Eastern Regional Health Authority (reference 2016015). Ethics approval was obtained from Regional Committee for Medical and Health Research Ethics (reference 2015/2447/REK sør-øst A). Results will be submitted to appropriate journals and presented in relevant conferences and social media