Capturing daily fluctuations, flare and self-management in rheumatoid arthritis: The patient perspective

Rheumatoid arthritis (RA) is a chronic, progressive and systemic auto-immune disease. However, there is very little research on how patients experience daily symptoms and their impact on life, nor how patients self-manage their symptoms on current treatment regimes. Flares of RA lead to major drug treatment decisions, yet there is no standardised definition of flare to support these decisions. Further, there is a dearth of literature addressing the decision-making process surrounding flare help-seeking. A mixed methods, pragmatic approach was taken to address these issues, employed iteratively in three studies: semi-structured interviews, Q-methodology and a longitudinal survey of daily symptoms for three months, alongside self-management and flare help-seeking.The interviews identified that even on current aggressive medication, in daily life patients experience continuing symptoms that vary within and between patients, and can be significant. When discussing their RA, patients used metaphors to enhance their explanations of inexplicable phenomena, such as flare. They fluctuate between living with their RA in the background, moving into the foreground, and at times having to deal with RA in the foreground. Each day patients attempt to balance the physical and emotional impact of RA with independence, a sense of normality and identity, by employing a stepped approach to self-management (“Mediation Ladder”), which leads to a life of Fluctuating Balances. When self-management is difficult, the Fluctuating Balances Model tips and their RA shifts into the foreground. The interview themes informed the two Q-methodology studies, which demonstrated four different experiences of daily life: “Feeling Good”, “Taking Active Control”, “Keeping RA in its Place” and “Struggling Through” (reported predominantly by men) and two ways in which patients differed in their decision-making process for seeking medical help for an RA flare: “Definite Decision” and “Cautious Indecision”. Items ranked as important were used to inform the survey studies, which identified that patients do not necessarily experience their highest symptoms when they are in flare. Thus two different flare-types have been identified: “Inflammatory Flare” (defined by pain and inflammation) and “Avalanche Flare” (defined by the cascading effect of inflammatory symptoms, emotions and life events). Patients are prompted to seek help when the impact of the flare becomes unmanageable.These findings have implications for clinical practice. First, the improved understanding of daily life with RA can be used to talk realistically with new patients about levels of symptoms and the Fluctuating Balances of daily life. Second, there is a need for agreed terminology between patients and professionals to define flare. Third, clinicians need to be aware that men are “struggling through” with their RA. Fourth, using or responding to metaphors may facilitate communication between patients and professionals. Future research needs to develop a greater understanding of men’s experiences of RA and support needs; to design an outcome measure for the novel concept of “Avalanche Flare”; and a fully-powered study to identify daily symptom patterns and potentially predict future symptom/flare patterns that might inform treatment decisions

Identifying different typologies of experiences and coping strategies in men with rheumatoid arthritis: A Q-methodology study

Objective: To identify typologies of experiences and coping strategies of men with RA Design: Q-methodology (a qualitative and quantitative approach to grouping people according to their subjective opinion). Men with RA sorted 64 statements relating to their experience of living with RA according to level of agreement across a normal distribution grid. Data were examined using Q-factor analysis. Setting: Rheumatology outpatient departments in the UK Participants: 30 of 65 invited men with RA participated in this study (46%) Results: All participants ranked highly the need to be well informed about their medication and the importance of keeping a positive attitude. Two factors describing the experiences and coping strategies of male patients living with RA were identified: Factor A: “Acknowledge, accept and adapt” (n=14) take a pro-active approach to managing the impact of RA and find different ways of doing things; whilst Factor B: “Trying to match up to a macho ideal” (n=8) are determined to continue with their pre-RA lives, and therefore push themselves to carry on even if this causes them pain. They are frustrated and angry due to the impact of RA but they internalise this rather than directing it at others. Conclusion: Whilst some men adapt to their RA by renegotiating their masculine identity, others struggle to relinquish their traditional masculine roles. Further research is needed to identify whether the finding that there are two distinct groups of men with RA can be generalised, and if so whether the differences can be explained by clinical, social or psychological factors, which may inform different therapeutic approaches

The OMERACT emerging leaders program: The good, the bad, and the future

The Journal of Rheumatology Copyright © 2019. All rights reserved. Objective. To describe the experience of the first OMERACT Emerging Leaders Program (ELP). Methods. A Delphi process identified positive aspects, areas for improvement, and future directions. Core items were defined as essential if they received ≥ 70% ratings. Results. Participants valued relatable/accessible mentors (100%), including an OMERACT Executive mentor (100%), and a support network of peers (90%). Key items for future development were funding support (100%) and developing knowledge about OMERACT processes (90%) and politics (80%). Conclusion. The ELP has the potential to provide targeted training for early career researchers to develop relevant skills for future leadership roles within OMERACT

The patient perspective of nurse-led care in early rheumatoid arthritis: A systematic review of qualitative studies with thematic analysis

Introduction: Management of rheumatoid arthritis has changed dramatically over the last decade and is characterised by early start of intensive treatment and tight monitoring of disease activity until remission. The role of nurse-led care at early stage of disease is not well understood.Aims: To develop an understanding of rheumatology nurse-led care from the perspective of patients with early rheumatoid arthritis.Methods: A systematic review of qualitative studies, reported in line with PRISMA checklist. In March 2019, the following databases were searched: MEDLINE, EMBASE, CINAHL, PsycINFO and OpenGrey. Studies were included if they: included adults with rheumatoid arthritis; were qualitative studies with data on patients' perspectives of nurse-led care; and published in peer-reviewed journals, in English, between 2010-2019. Due to few studies in early rheumatoid arthritis, inclusion was extended to adults with established rheumatoid arthritis. Two reviewers screened abstracts and full texts. Joanna Briggs Institute Critical Appraisal Tool was used for quality assessment. Thematic synthesis was conducted according to the framework of Thomas and Harden (2008).Results: The search identified 1034 records. After screening and assessing for eligibility, eight qualitative studies were included in the review (133 patients). Three themes were identified from the synthesis. Nurse-led care was seen to provide professional expertise in planning and delivery of care. A person-centred approach was used combined with good communication skills, thus creating a positive therapeutic environment. Nurse-led care was described as providing a sense of empowerment and psychological support.Conclusion: Patients with rheumatoid arthritis are supportive of nurse-led care. They value its professionalism and person-centred approach which provide a sense of security and confidence.Relevance to clinical practice: The findings outline ingredients of nurse-led care that are important to patients. These can inform nurses' professional development plans, service improvement and the competence framework for rheumatology nursing

Men, rheumatoid arthritis, psychosocial impact and self-management: A narrative review.

Rheumatoid arthritis (RA) is a chronic disease affecting fewer men than women. We systematically reviewed the literature on impact and self-management of RA men. Twenty eight papers were included, and grouped into two categories: Psychosocial impact of RA; and Coping and self-management. This review finds gender differences relating to quality of life; work; distress; self-management; coping; and support. We conclude there is a dearth of literature focussing on RA men only, and mixed gender studies include insufficient men to draw strong conclusions about men. Thus, further research is needed to understand the support needs of men with RA in depth

The patient perspective on absence of disease activity in rheumatoid arthritis: A survey to identify key domains of patient-perceived remission

© 2017, BMJ Publishing Group. All rights reserved. Background: Guidelines suggest treatment in rheumatoid arthritis (RA) to target remission, in close consultation with the patient. Our recent qualitative study of the patients' perspective on remission in RA identified 26 domains. The current study aimed to identify a short list of the most important aspects to inform future research. Methods: Patients with RA from the Netherlands, the UK, Austria, Denmark, France and the USA completed a survey that contained all domains identified in our qualitative study. They rated domains for importance ('not important', 'important' or 'essential' to characterise a period of remission) and if important or essential, whether this domain needs to be 'less', 'almost gone' or 'gone' to reflect remission. Respondents were also asked to determine their personal top 3 most important/ essential domains. Frequency of specific domains in the top 3 was calculated, and domains were sorted on the percentage of patients that evaluated a particular domain as 'essential'. Results: Of 274 respondents, 75% were female, mean (SD) age 57(13) years, disease duration 12(9) years. The top 3 were as follows: pain (67%), fatigue (33%) and independence (19%); domains most frequently rated as 'essential' were as follows: pain (60%), being mobile (52%), physical function (51%), being independent (47%) and fatigue (41%). Pain needed to be less (13%), almost gone (42%) or gone (45%) to reflect remission. Similar patterns were seen for fatigue, independence, mobility and physical functioning. Conclusion: Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission

Living with foot and ankle disorders in rheumatic and musculoskeletal diseases: A systematic review of qualitative studies to inform the work of the OMERACT foot and ankle working group

ObjectivesThis study aimed to determine outcome domains of importance to patients living with foot and ankle disorders in rheumatic and musculoskeletal diseases (RMDs), by exploring the symptoms and impact of these disorders reported in existing qualitative studies.MethodsSix databases were searched from inception to March 2022. Studies were included if they used qualitative interview or focus group methods, were published in English, and involved participants living with RMDs (inflammatory arthritis, osteoarthritis, crystal arthropathies, connective tissue diseases, and musculoskeletal conditions in the absence of systemic disease) who had experienced foot and ankle problems. Quality was assessed using the Critical Appraisal Skills Programme qualitative tool and confidence in the findings was assessed using the Grading of Recommendations Assessment, Development and Evaluation Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. All data from the results section of included studies were extracted, coded and synthesised to develop themes.ResultsOf 1,443 records screened, 34 studies were included, with a total of 503 participants. Studies included participants with rheumatoid arthritis (n = 18), osteoarthritis (n = 5), gout (n = 3), psoriatic arthritis (n = 1), lupus (n = 1), posterior tibial tendon dysfunction (n = 1), plantar heel pain (n = 1), Achilles tendonitis (n = 1), and a mixed population (n = 3), who live with foot and ankle disorders. Seven descriptive themes were generated from the thematic synthesis: pain, change in appearance, activity limitations, social isolation, work disruption, financial burden and emotional impact. Descriptive themes were inductively analysed further to construct analytical themes relating to potential outcome domains of importance to patients. Foot or ankle pain was the predominant symptom experienced by patients across all RMDs explored in this review. Based on grading of the evidence, we had moderate confidence that most of the review findings represented the experiences of patients with foot and ankle disorders in RMDs.ConclusionsFindings indicate that foot and ankle disorders impact on multiple areas of patients’ lives, and patients’ experiences are similar regardless of the RMD. This study will inform the development of a core domain set for future foot and ankle research and are also useful for clinicians, helping to focus clinical appointments and measurement of outcomes within clinical practice

A Q-methodology study of flare help-seeking behaviours and different experiences of daily life in rheumatoid arthritis

© 2014 Lin et al.; licensee BioMed Central Ltd. Background: Previous studies have not addressed rheumatoid arthritis (RA) patients' help-seeking behaviours for RA flares, and only one small qualitative study has addressed how patients experience daily life on current treatment regimes. Thus, this study aims to identify clusters of opinion related to RA patients' experiences of daily life on current treatments, and their help-seeking behaviours for RA flares. Methods: Using Q-methodology (a methodology using qualitative and quantitative methods to sort people according to subjective experience), two separate studies were conducted with the same sample of RA patients (mean age 55, 73% female). Thirty participants sorted 39 statements about daily life (Q-study 1) and 29 participants separately sorted 23 statements about flare help-seeking (Q-study 2). Data were examined using Q-factor analysis. Results: Daily life with RA (Q-study 1): Three factors relating to the experience of living with RA were extracted and explained. Patients belonging to Factor A (mean age 62, 86% female) use effective self-management techniques to control the daily impact of RA. Those in Factor B (mean age 55, 75% male) struggle to self-manage and cope. Whilst patients in Factor C (mean age 42, 100% female) prioritise life responsibilities over their RA, reporting less impact. Flare help-seeking (Q-study 2): Two factors explaining the experience of flare help-seeking (unrelated to the factors from Q-study 1) were extracted and explained. Factor X (68.8% on biologics) reported seeking help quickly, believing the medical team is there to help. Factor Y (0% on biologics) delay help-seeking, concerned about wasting the rheumatologist's time, believing they should manage alone. All participants agreed they sought help due to intense pain and persistent, unmanageable symptoms. Conclusions: Patients with different characteristics appear to manage RA life in different ways and men may struggle more than women. Whilst all patients are prompted to seek help by persistent, unmanageable symptoms, some delay help-seeking. Further research is needed to quantify the severity of daily symptoms, the level of symptoms needed for patients to define themselves as in flare and to understand the support needs of RA men

Meeting Minutes

Minutes for March 2, 1968

Developing an outcome measures in rheumatology (OMERACT) core set of outcome measures for foot and ankle disorders in rheumatic and musculoskeletal diseases (COMFORT): Core domain set study protocol

Background: Foot and ankle involvement is common in rheumatic and musculoskeletal diseases (RMDs). High-quality evidence is lacking to determine the effectiveness of treatments for these disorders. Heterogeneity in the outcomes used across clinical trials and observational studies hinders the ability to compare findings, and some outcomes are not always meaningful to patients and end-users. The Core set of Outcome Measures for FOot and ankle disorders in RheumaTic and musculoskeletal diseases (COMFORT) study aims to develop a core outcome set (COS) for use in all trials of interventions for foot and ankle disorders in RMDs. This protocol addresses core outcome domains (what to measure) only. Future work will focus on core outcome measurement instruments (how to measure). Methods: COMFORT: Core Domain Set is a mixed-methods study involving the following: (i) identification of important outcome domains through literature reviews, qualitative interviews and focus groups with patients and (ii) prioritisation of domains through an online, modified Delphi consensus study and subsequent consensus meeting with representation from all stakeholder groups. Findings will be disseminated widely to enhance uptake. Conclusions: This protocol details the development process and methodology to identify and prioritise domains for a COS in the novel area of foot and ankle disorders in RMDs. Future use of this standardised set of outcome domains, developed with all key stakeholders, will help address issues with outcome variability. This will facilitate comparing and combining study findings, thus improving the evidence base for treatments of these conditions. Future work will identify suitable outcome measurement instruments for each of the core domains. Trial registration: This study is registered with the Core Outcome Measures in Effectiveness Trials (COMET) database, as of June 2022: https://www.comet-initiative.org/Studies/Details/2081