The experience of people with rheumatoid arthritis living with fatigue: A qualitative metasynthesis

ObjectivesTo identify, appraise and synthesise qualitative studies on the experience of living with rheumatoid arthritis (RA)-related fatigue. MethodsWe conducted a qualitative metasynthesis encompassing a systematic literature search in February 2017, for studies published in the past 15 years, in PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, SveMed, PsychINFO and Web of Science. To be included, the studies had to report the experience of living with fatigue among adults with RA. The analysis and synthesis followed Malterud's systematic text condensation. ResultsEight qualitative articles were included, based on 212 people with RA (69% women) and aged between 20 and 83 years old. The synthesis resulted in the overall theme A vicious circle of an unpredictable symptom'. In addition, the synthesis derived four subthemes: being alone with fatigue'; time as a challenge'; language as a tool for increased understanding' and strategies to manage fatigue'. Fatigue affects all areas of everyday life for people with RA. They strive to plan and prioritise, pace, relax and rest. Furthermore, they try to make use of a variety of words and metaphors to explain to other people that they experience that RA-related fatigue is different from normal tiredness. Despite this, people with RA-related fatigue experience feeling alone with their symptom and they develop their own strategies to manage fatigue in their everyday life.ConclusionsThe unpredictability of RA-related fatigue is dominant, pervasive and is experienced as a vicious circle, which can be described in relation to its physical, cognitive, emotional and social impact. It is important for health professionals to acknowledge and address the impact of fatigue on the patients' everyday lives. Support from health professionals to manage fatigue and develop strategies to increase physical activity and maintain work is important for people with RA-related fatigue

The two faces of user involvement: Everyday life and local context

In most developed countries, healthcare systems are increasingly faced with political demands to involve users in the planning and development of their services. This article reports findings from an ethnographic fieldwork that investigated an inter-organizational project involving user representation. The project was set up to develop an educational programme for people with rheumatoid arthritis (RA). By investigating user representatives’ experiences, our aim was to bring to light more general determinants and conditions of user involvement in health services. Drawing on an analytical framework within everyday life sociology, the analysis explored the dual concept of “conditions and conditionality”, metaphorically described in this article as “the two faces of user involvement”. From one perspective, everyday life experiences – living with RA, encounters with the health system and professional identities and work life – conditioned user representatives’ participation in the project. From another perspective, the local institutional context and interactions within the project framework conditioned the way in which users are involved. The ways in which these conditions changed over time are described, in relation to the specific spatial, temporal and social developments in both the everyday lives of the user representatives and in the local project

The two faces of user involvement: Everyday life and local context

In most developed countries, healthcare systems are increasingly faced with political demands to involve users in the planning and development of their services. This article reports findings from an ethnographic fieldwork that investigated an inter-organizational project involving user representation. The project was set up to develop an educational programme for people with rheumatoid arthritis (RA). By investigating user representatives’ experiences, our aim was to bring to light more general determinants and conditions of user involvement in health services. Drawing on an analytical framework within everyday life sociology, the analysis explored the dual concept of “conditions and conditionality”, metaphorically described in this article as “the two faces of user involvement”. From one perspective, everyday life experiences – living with RA, encounters with the health system and professional identities and work life – conditioned user representatives’ participation in the project. From another perspective, the local institutional context and interactions within the project framework conditioned the way in which users are involved. The ways in which these conditions changed over time are described, in relation to the specific spatial, temporal and social developments in both the everyday lives of the user representatives and in the local project

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research

BACKGROUND: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. OBJECTIVES: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. DISCUSSION: Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. CONCLUSION: We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide

Involving patients as research partners in research in rheumatology: a literature review in 2023

OBJECTIVE: The inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in rheumatology. The level of involvement of PRPs in translational research in rheumatology remains unknown, while in randomised clinical trials (RCTs), it has been reported to be 2% in 2020. Therefore, we aimed to assess the involvement of PRPs in recent translational studies and RCTs in rheumatology. METHODS: We conducted a scoping literature review of the 80 most recent articles (40 translational studies and 40 RCTs) from four target diseases: rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus and lower extremity osteoarthritis. We selected 20 papers from each disease, published up until 1 March 2023, in rheumatology and general scientific journals. In each paper, the extent of PRP involvement was assessed. Analyses were descriptive. RESULTS: Of 40 translational studies, none reported PRP involvement. Of 40 RCTs, eight studies (20%) reported PRP involvement. These trials were mainly from Europe (75%) and North America (25%). Most of them (75%) were non-industry funded. The type of PRP involvement was reported in six of eight studies: six studies reported PRP participation in the study design or design of the intervention and two of them in the interpretation of the results. All the trials reporting the number of PRPs (75%), involved at least two PRPs. CONCLUSION: Despite a worldwide movement advocating for increased patient involvement in research, PRPs in translational research and RCTs in rheumatology are significantly under-represented. This limited involvement of PRPs in research highlights a persistent gap between the existing recommendations and actual practice

Evaluating the participation of junior members and patient and healthcare professionals representatives in EULAR task forces:Results from an international survey

Objective European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members). Methods An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions. Results In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%). Conclusion Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.</p

2019 EULAR recommendations for the generic core competences of health professionals in rheumatology

© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ. Background/objectives: To maintain and optimise the quality of care provided by health professionals in rheumatology (HPRs), adequate educational offerings are needed. This task force (TF) aimed to develop evidence-based recommendations for the generic core competences of HPRs, with specific reference to nurses, physical therapists (PTs) and occupational therapists (OTs) to serve as a basis for their postgraduate education. Methods: The EULAR standardised operating procedures for the development of recommendations were followed. A TF including rheumatologists, nurses, PTs, OTs, patient-representatives, an educationalist, methodologists and researchers from 12 countries met twice. In the first TF meeting, 13 research questions were defined to support a systematic literature review (SLR). In the second meeting, the SLR evidence was discussed and recommendations formulated. Subsequently, level of evidence and strength of recommendation were assigned and level of agreement (LoA) determined (0-10 rating scale). Results: Three overarching principles were identified and 10 recommendations were developed for the generic core competences of HPRs. The SLR included 79 full-text papers, 20 of which addressed the competences, knowledge, skills, attitudes and/or educational needs of HPRs from multiple professions. The average LoA for each recommendation ranged from 9.42 to 9.79. Consensus was reached both on a research and educational agenda. Conclusion: Evidence and expert opinion informed a set of recommendations providing guidance on the generic core competences of HPRs. Implementation of these recommendations in the postgraduate education of HPRs at the international and national level is advised, considering variation in healthcare systems and professional roles