It's like a juggling act: rheumatoid arthritis patient perspectives on daily life and flare while on current treatment regimes

Abstract

Objective. The objective of this study was to explore patients’ experiences of RA daily life while on modern treatments.Methods. The methods of this study comprised semi-structured interviews with 15 RA patients, analysed using inductive thematic analysis.Results. Four themes suggest patients experience life with RA along a continuum from RA in the background to the foreground of their lives, underpinned by constant actions to maintain balance. Living with RA in the background shows patients experience continuous, daily symptoms, which they mediate through micromanagement (mediating the impact of RA on daily life), while learning to incorporate RA into their identity (redefining me). RA moving into the foreground shows patients experience fluctuating symptoms (unwelcome reminders) that may or may not lead to a flare (trying to make sense of fluctuation). Dealing with RA in the foreground shows how patients attempt to manage RA flares (trying to regain control) and decide to seek medical help only after feeling they are losing control. Patients employ a stepped approach to self-management (mediation ladder) as symptoms increase, with seeking medical help often seen as the last resort. Patients seek to find a balance between managing their fluctuating RA and living their daily lives.Conclusion. Patients move back and forth along a continuum of RA in the background vs the foreground by balancing self-management of symptoms and everyday life. Clinicians need to appreciate that daily micromanagement is needed, even on current treatment regimes. Further research is needed to quantify the level and impact of daily symptoms and identify barriers and facilitators to seeking help.

More than Just Minutes of Stiffness in the Morning: Report from the OMERACT Rheumatoid Arthritis Flare Group Stiffness Breakout Sessions

“…Furthermore, stiffness was not always limited to specific joints, but could vary in location. Exacerbating factors included weather and immobility, and alleviating factors and self-management strategies were described, also consistent with earlier work for multiple RA flare symptoms (2, 15, 16). Of note, in both studies participants described stiffness most often in terms of its impact on day-to-day life activities including getting dressed, driving, cooking, attending (or not) a social event.…”

Effectiveness of an integrated care intervention on supervisor support and work functioning of workers with rheumatoid arthritis

“…Even if RA is put back to the background of patient's lives by means of disease-modifying agents, most patients still experience continuous, daily symptoms. [4] RA has a profound impact on participation, from daily life activities, to, for example, a person's working life. [5][6][7] Despite a slight decrease in work disability (permanent exclusion from work) rates over the past decade, permanent work disability still occurs frequently.…”

The educational needs of nursing staff taking care of patients with rheumatoid arthritis

“…RA patients also delay seeking help in order to maintain a feeling of self-management over RA while using microand crisis management techniques. [3] In studies, it has been found that nurses hope for continuous and regular education concerning patient education, in order to develop themselves as professionals. [9] Practice nurses have also expressed their interest in more training in the provision of counselling.…”

“…Rheumatoid arthritis (RA) widely affects patients' everyday lives [1][2][3] and has physical, psychological and social impacts. [4] In Finland, newly diagnosed RA patients have their follow-up controls in hospital, but otherwise care takes place in local health centres.…”