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.

Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis.

BACKGROUND: Involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders. METHODS: The James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop. RESULTS: Two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10. CONCLUSIONS: Through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.

Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol.

BACKGROUND: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. MAIN BODY: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way. CONCLUSION: A JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.

Internet Program for Physical Activity and Exercise Capacity in Children With Juvenile Idiopathic Arthritis: A Multicenter Randomized Controlled Trial.

OBJECTIVE: To determine the effects of Rheumates@Work, an internet-based program supplemented with 4 group sessions, aimed at improving physical activity, exercise capacity, health-related quality of life (HRQoL), and participation in children with juvenile idiopathic arthritis. METHODS: Patients were recruited from 3 pediatric rheumatology centers in The Netherlands for an observer-blinded, randomized controlled multicenter trial. Physical activity level, time spent in rest, light, and moderate-to-vigorous physical activity (MVPA) were recorded in a diary and with an accelerometer, before intervention, after intervention, and at followup after 3 and 12 months (intervention group only). Exercise capacity was assessed using the Bruce treadmill protocol, HRQoL was assessed with the Pediatric Quality of Life Inventory generic core scale, and participation in school and in physical education classes were assessed by questionnaire. RESULTS: The intervention group consisted of 28 children, and there were 21 children in the control group. MVPA, exercise capacity, and participating in school and physical education classes improved significantly in the intervention group. HRQoL improved in the control group. No significant differences were found between groups. The effect of Rheumates@Work on physical activity and exercise capacity lasted during the 12 months of followup. Improvements in physical activity were significantly better for the cohort starting in winter compared to the summer cohort. CONCLUSION: Rheumates@Work had a positive, albeit small, effect on physical activity, exercise capacity, and participation in school and physical education class in the intervention group. Improvements lasted for 12 months. Participants who started in winter showed the most improvement. Rheumates@Work had no effect on HRQoL.

Fatigue in patients with Juvenile Idiopathic Arthritis: relationship to perceived health, physical health, self-efficacy, and participation.

BACKGROUND: Fatigue is common in patients with JIA and affects daily life negatively. We assessed the presence and severity of fatigue in patients with JIA, including factors presumed associated with fatigue (e.g., disease activity, disability, pain, physical activity, exercise capacity, and self-efficacy), and whether fatigue is related to participation in physical education classes, school attendance, and sports frequency. METHODS: The current study used baseline data of 80 patients with JIA (age 8-13) who participated in an intervention aimed at promoting physical activity. Primary outcome measurements were fatigue, assessed using the Pediatric-Quality-of-Life-Inventory (PedsQl)-Fatigue-scale and energy level assessed using a VAS scale. Other outcome measurements were disease activity (VAS Physician Global Assessment Scale), disability (Childhood Health Assessment Questionnaire), physical activity (accelerometer), exercise capacity (Bruce treadmill test), self-efficacy (Childhood Arthritis Self-Efficacy Scale), and participation (self-report). RESULTS: Sixty percent of patients with JIA suffered from daily low-energy levels; 27% suffered from very low-energy levels more than half the week. Low energy levels were best predicted by disability and low physical activity. Fatigue measured with the PEDsQL was higher compared to the control-population. Disability and low self-efficacy were main predictors of fatigue. Self-efficacy was a predictor of fatigue but did not act as moderator. Fatigue was a predictor for sports frequency but not for school attendance. CONCLUSION: Fatigue is a significant problem for JIA patients. Interventions aimed at reducing perceived disability, stimulating physical activity, and enhancing self-efficacy might reduce fatigue and thereby enhance participation. TRIAL REGISTRATION: Trial number ISRCTN92733069.

Design and acceptance of Rheumates@Work, a combined internet-based and in person instruction model, an interactive, educational, and cognitive behavioral program for children with juvenile idiopathic arthritis.

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a chronic rheumatic disease. Patients suffer daily discomforts such as pain, fatigue, stiffness, and mood disturbances. Their exercise capacity is decreased to a variable degree and physical activity levels may be impaired. To prevent long-term cardiovascular risks associated with JIA and medication, it is important to encourage physical activity. To achieve this we developed Rheumates@Work (R@W), a combined internet-based and in person instruction model, an interactive, educational, and cognitive behavioral program. The aim of this study is twofold: to describe the theoretical background and design of R@W based on Pender's Health Promotion Model, and to assess its acceptance. METHODS: We enrolled 8 to 13-year-old JIA patients, from 3 outpatients clinics in The Netherlands, in R@W. Inclusion criteria were a low disease activity (VAS physician <20 mm), comprehension of the Dutch language and absence of relevant co-morbidity. We assessed acceptance by measuring the participants' commitment to the program, the level of interaction on patient's initiative (f.e. mails send by the patient), technical aspects and satisfaction. Commitment was defined as the percentage of participants that completed the assignments and how much encouragement the participants needed for this. Satisfaction was measured with an anonymous questionnaire concerning f.e. time investment and perceived benefits. Costs were monitored. RESULTS: Of the 64 patients we enrolled, 23 boys and 41 girls, 93.8 % completed the program. Participant-initiated interaction was seen in 10.7 %, 24.7 % send a mail because of technical problems. Eighty-two percent of the participants and 99 % of the parents liked the program, and 85 % of the participants indicated that they had learnt something, or quite a lot. Development costs of the program were low. CONCLUSION: The HPM is suitable for a behavioral intervention program such as R@W. Acceptance and satisfaction of R@W were high and the costs of the program were low. TRIAL NUMBER: ISRCTN92733069.