| Summary: | 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.
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