Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with rheumatology professionals in 23 European and Asian countries.

OBJECTIVES: To disseminate and assess the level of acceptability and applicability of the European Alliance of Associations for Rheumatology (EULAR) recommendations for patient education among professionals in rheumatology across Europe and three Asian countries and identify potential barriers and facilitators to their application. METHODS: A parallel convergent mixed-methods design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0-10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. RESULTS: A total of 1159 completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment and inviting patients to provide feedback on patient education delivery. CONCLUSIONS: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools.

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

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

Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries.

OBJECTIVES: To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries. METHODS: A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. RESULTS: The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction χ(2) p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as 'testlets'), fit to the model was satisfied (item-trait interaction χ(2) p>0.18) in all pooled disease group datasets except OA (χ(2)=99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated to enable transformation of ENAT scores when required. CONCLUSIONS: The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.

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.

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

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.

Fatigue, worry, and fear--life events in the narratives of women with fibromyalgia.

In this article we explored narrated life stories of 20 women with a long history of fibromyalgia to reach a deeper understanding of how people interpret the causes and consequences of different life events and illness experiences. Based on narrative analysis, we identified three model narratives that illustrate the different life courses of women with fibromyalgia. In addition, we described a counternarrative that questions fibromyalgia as a chronic disease. In this narrative study, we give insights to the invisible symptoms and unheard experiences that are associated with fibromyalgia and to the ongoing discussion on the etiology and maintenance of fibromyalgia.

Organizational vision: experience at the unit level.

AIMS: The main focus of this follow-up study was to describe how the vision statements were perceived to describe the work in the units and what kind of relationships there were between the vision statements and background factors during the 3-year follow-up. BACKGROUND: he vision statement gives a competitive advantage to the organization. It helps find the desired direction during a period of transformation in the organization. Satisfaction, empowerment and motivation are challenged in the vision-realization process. METHODS: he data were gathered by questionnaire from the multidisciplinary team members on three occasions. The response rate was 58% (n = 115, n = 112) for the first and second data sets, and 53% (n = 103) for the third data set. The data was analysed statistically. RESULTS: The organizational vision was perceived as quite stable during the 3 years. Factors associated with the vision statement at the end of the 3-year period were workload, experience of stress, work motivation, work satisfaction, importance of work independence and general empowerment. IMPLICATIONS FOR NURSING MANAGEMENT: eaders are able to sustain the vision statement by motivating and empowering the staff. Empowerment especially is worth reinforcing in a vision-realization process.

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.

BACKGROUND: 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. METHODS: 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. RESULTS: 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 (X(2)=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 (X(2)=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. CONCLUSION: 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.

Continuing professional education for care staff: evaluation of training and development project.

This study describes the "Professional Career in Arthritis Care (PCA) 2003-2005" training and development project conducted at one hospital in Finland. The project consisted of 5,194 training days for 93 participants and 13 practical development tasks. The research task is to describe (1) the level of need for additional training once the project had ended, (2) the significance of the development task from the perspective of professional development, and (3) how the development task has been introduced into the work community. The material was gathered by questionnaire. The training needs remained quite stable in spite of lengthy training when measured by the themes of the curriculum covered during the PCA. When asked about their need for further training in general in order to manage their current job, a total of 66% of participants still expressed a need for training at the end of the PCA. The development task was viewed mostly positively. The PCA project has given some support to professional development and organizational change, general empowerment, motivation, and satisfaction.

Effects of organizational change on work-related empowerment, employee satisfaction, and motivation.

This article reports the results of a longitudinal quantitative study on nurses' views on factors promoting and impeding empowerment and examines the relationship between work-related empowerment and background variables in one hospital. Data were collected using a self-administered questionnaire and analyzed statistically. Nurses gave lowest assessments of promoting factors on the second measurement occasion, a time when the organization was going through major changes. Both job satisfaction and motivation showed a positive relationship with factors promoting empowerment. Organizational changes have a direct effect on the work environment in terms of empowerment and job satisfaction. To cope successfully with changes, special attention must be paid to personnel management. It seems that factors promoting and impeding empowerment can be used to measure effects of organizational changes as well.

'I've Been Walking on Eggshells All My Life': Fibromyalgia Patients' Narratives About Experienced Violence and Abuse.

According to earlier research, the prevalence of violence and abuse in the life history of patients with chronic widespread pain and fibromyalgia seems to be high in comparison with other pain patients and healthy controls. The purpose of the present study was to explore how experiences of violence and abuse are expressed and reflected on and how the causes and consequences of violence are interpreted by female patients with a long history of fibromyalgia. The data were drawn from narrative interviews of 11 women who had earlier participated in a fibromyalgia-specific rehabilitation course. The findings are presented through three main themes: loss of self-esteem, physical and mental bruises, and loss of womanhood. The onset of fibromyalgia was perceived as an inevitable result of physical or mental trauma. In conclusion, the narrated life stories indicated that violence is still hidden behind a wall of silence and non-interference in our society. The devastating mental and physical consequences of violence in different forms may be carried by the individual for years, even decades. Understanding any exposure to violence that a patient has endured may help healthcare professionals to understand the individual's health behaviour and any possible reluctance to undergo treatment and rehabilitation. Copyright © 2015 John Wiley & Sons, Ltd.

Finally heard, believed and accepted--peer support in the narratives of women with fibromyalgia.

OBJECTIVE: The aim of the present study was to analyse how experiences of peer support were described and reflected upon several years after a group rehabilitation intervention. Moreover, we wanted to learn more about what meanings were ascribed to peer support in the narratives of women with a long history of fibromyalgia. METHOD: This was a qualitative study in which narrative life story interviews of 20 women with fibromyalgia were collected and analysed to elicit the impact of peer support in their lives. RESULTS: We identified four main domains of experienced peer support; permission to talk, need of information, reciprocity and self-evaluation through comparison. The meanings ascribed to peer support were mainly positive, although the participants also expressed thoughts about fear of future, hopelessness and mental health issues. CONCLUSIONS: Long-term fibromyalgia patients saw peer support as an impetus to an ongoing process of reconstruction of identity, illness acceptance and coping with fibromyalgia. PRACTICE IMPLICATIONS: In addition to up-dating their knowledge about fibromyalgia and its treatment, long term patients may need arenas where they can share and compare their experiences to those of other patients with a long history of fibromyalgia.

Improving the quality of rheumatoid arthritis patients' education using written information.

OBJECTIVE: The objective of this study was to evaluate whether the quality of patient education could be improved by using written education materials. METHODS: Seventy-five inpatients with rheumatoid arthritis (RA) were provided with individual education sessions during their inpatient stay. The education sessions were supported with written educational materials. A patient education quality instrument was used to assess the sufficiency and implementation of the education and the readiness of nurses and doctors to deliver the education. A Mann-Whitney U-test and content analysis was used to analyse the data. RESULTS: There was a statistically significant difference in the sufficiency of education concerning the disease, medication and treatment after the revised material was introduced (p < 0.005). The quality of interaction improved significantly during the intervention (p = 0.004). The strengths of the education included individual treatment, two-way interaction, the opportunity to receive patient education and its sufficiency. CONCLUSION: Clear, readable and understandable written education material improved the quality of the education of RA patients in terms of implementation, sufficiency and the readiness of nurses and doctors to deliver the education.

Women's narratives on experiences of work ability and functioning in fibromyalgia.

BACKGROUND: Fibromyalgia is a significant health problem for women of working age. However, little is known about the long-term effects of fibromyalgia in everyday life or on work ability. METHODS: A narrative interview study was conducted to explore the experiences of work ability and functioning of patients with a long history of fibromyalgia. Twenty women, aged 34-65 years, were purposively chosen for the interviews, to reach a wide range of patients with different social and professional backgrounds. RESULTS: Four types of experience concerning work ability were identified in the narratives: confusion, coping with fluctuating symptoms, being 'in between' and being over the edge of exhaustion. Severe pain and fatigue symptoms, combined with a demanding life situation and ageing, seemed to lead to substantial decrease in work ability and functioning over the long term. In the narratives, vocational rehabilitation or adjustments to work tasks were rarely seen or were started too late to be effective. CONCLUSIONS: Exploring the life stories of women with fibromyalgia can reveal the perceived causes and consequences of fibromyalgia related to work ability or disability, which can be utilized in developing client-centred rehabilitation approaches and effective interventions to support work ability and avoid premature retirement in fibromyalgia patients.

Rheumatology nurses' work-related empowerment.

OBJECTIVE: The purpose of the study was to investigate rheumatology nurse specialists' work related empowerment. METHOD: Nine nurses undertaking graduate studies were asked to write an essay on 'What work related skills does the rheumatology nurse need to master?' In addition, one interview was conducted. The material was analysed using the method of inductive content analysis. RESULTS: The following key areas of work related empowerment were identified as important: knowledge about rheumatic diseases; treatments and follow up monitoring care; knowledge about patient education and counselling; collaboration and the ability to co operate; mastery of manual skills and development of the quality of nursing care for patients with rheumatic disease. CONCLUSION: The study contributes to a better understanding of work related empowerment among rheumatology nurses. The results of the study can be used to develop the role components of healthcare professionals who attend patients with rheumatic disease.

Organizational change and work-related empowerment.

AIM: This study describes the views of multidisciplinary teams on work-related empowerment in a transitional organization. METHODS: The data were collected between September 2003 and January 2004 (n=115) and one year later (n=112) using a self-administered questionnaire consisting of verbal and behavioural items, empowerment outcomes, and factors promoting and impeding empowerment. The target population consisted of all members working in multidisciplinary teams at the Rheumatism Foundation Hospital in Finland. The response rate was 58% at both data collections. The data were analysed statistically using SPSS software. RESULTS: The multidisciplinary teams rated their work empowerment quite highly. The number of empowerment promoting factors was lowest for the category of future orientedness, consisting of continuity of work, opportunities for advancement, and access to information. The number of impeding factors was also highest for the same category of future orientedness, consisting here of organizational bureaucracy and hierarchy, authoritarian leadership, poor access to information, and short working periods. CONCLUSIONS: It is important not to underestimate the impacts of organizational changes: they have a direct effect on the work environment and may contribute to higher rates of dissatisfaction, burnout and absenteeism among health care workers.

The constancy of work-related empowerment.

OBJECTIVE: This study describes experiences of work empowerment among staff members at the Rheumatism Foundation Hospital in Helsinki, Finland. METHODS: The data were collected on two occasions in 2004 and 2005 using a structured questionnaire with background variables and items concerning verbal, behavioural and outcome empowerment. The questionnaires were sent to all (n1=115, n2=112) members of multidisciplinary teams at the Rheumatism Foundation Hospital, with the exception of physicians, departmental secretaries and administrative personnel. The response rate at both data collections was 58%. The data were analysed by statistical methods. RESULTS: No statistically significant differences were seen in work empowerment between the two data collections. Perceptions of work-related empowerment were relatively strong. CONCLUSIONS: Work-related empowerment appears to be relatively constant and independent of changes in the organization. Indeed there is good reason to ask whether work empowerment is primarily a function of the individual employee's strengths and competencies.