Background Qualitative studies of patient experiences have provided useful insights into how rheumatoid arthritis (RA) affects quality of life (QoL). RA threatens self-image and feelings of independence, reduces personal control, and is associated with difficulty in juggling self-management alongside pre-existing demands of work, home and family life. Pain, fatigue, sleep problems and low mood are commonly reported by patients and perceived as particularly troublesome aspects of RA. We wanted to know whether these symptoms of RA were viewed as the key drivers of reported changes to QoL.
Objectives To explore RA patients' perceptions of RA-related pain, fatigue, sleep problems and mood, and their impact on QoL.
Methods Participants, recruited through RA charities across England, were purposively sampled to include a broad range of current ages and ages at onset of RA. Eleven individuals with RA were interviewed either in a group interview (three participants) or individual semi-structured interviews (eight participants). The interview topic guide was developed in consultation with patient representatives. Interviews were audio-recorded and transcribed in full. Interview data were analysed using inductive latent thematic analysis.
Results All participants were female, aged 36–75 years. Disease duration ranged from five months to 31 years.
Pain, fatigue, poor sleep and low mood were all attributed to RA, and viewed as having wide-ranging impacts on QoL. Participants saw the bidirectional nature of relationships between these four symptoms as particularly challenging. For example, reduced sleep led to increased pain and vice versa.
Themes included: “Fluctuating symptoms” referring to the impact of the significant changes in mood, fatigue or pain which can occur within a single 24 hour period during “an RA flare”; “The unpredictability of symptoms” was viewed as emotionally draining, anxiety-provoking and undermined both short and long-term plans; “Challenging” described both the symptoms and the need to anticipate potential daily challenges in the context of current levels of symptoms.
Most were able to articulate the attitudinal, practical and emotional strategies which could facilitate adaptation to living with RA such as the need to maintain optimism, a focus on what could realistically be achieved, day-to-day cognitive flexibility and practical support.
Pain, fatigue and changes to sleep patterns were viewed as affecting the following aspects of QoL; ability to work effectively, family and social relationships, self-worth, ability to feel “in control”, threats to future plans and appearance. The appearance theme included a desire not to be viewed as ill or “disabled”, weight-gain and self-consciousness.
Conclusions Daily and hourly variations in pain, fatigue and low mood are challenging for individuals with RA. The unpredictable nature of RA often was associated with anticipatory anxiety and mood fluctuations within the day. However, despite this the importance of positivity and acceptance were identified as mitigating some of the impact RA was having on QoL.
Acknowledgements This study was funded by an Arthritis Research UK project grant (Project number 21188)
Disclosure of Interest None declared