Background Fatigue, pain, stiffness and impaired physical function are some of the most pronounced symptoms in rheumatoid arthritis (RA) that may affect quality of life. Quality of life is an individual experience composed of a wide range of factors, including physical health, psychological state, level of independence, social relationships, and the patients' relationship to salient features of their environment. There is a need to describe and assess quality of life in chronic diseases like established RA. Previous research has mainly focused on disease-specific instruments for assessing quality of life. A deeper understanding of patients' experience of quality of life in established RA is important in both clinical research and daily clinical practice.
Objectives To describe variations in patients' experiences of quality of life in established RA
Methods The study had a qualitative design with a phenomenographic approach, including 22 interviews with patients from the Swedish BARFOT (Better Anti-Rheumatic FarmacoTherapy) cohort, BARFOT, a long time follow up study of early RA. Patients were strategically selected by gender (14 women and 8 men), age (30 to 84 years old), disease duration (8–23 years), function as measured by HAQ (0–1.38), and quality of life as measured by EQ5D (0.52–1.00). The interviews were recorded, transcribed verbatim and coded into categories.
Results Four categories emerged from the patients' experiences of quality of life in established RA: well-being, freedom, empowerment, and participation. Quality of life as well-being meant pleasure and being physical active. Quality of life as freedom meant dependence or independence in the ability to manage daily life activities. Quality of life as empowerment meant different coping strategies, such as positive thinking and resources to manage fatigue, pain and physical function. Quality of life as participation meant togetherness in different contexts with other people.
Conclusions Quality of life in established RA could be understood by the patients in different ways. The patients experienced quality of life as well-being, freedom, empowerment, and participation. This is important knowledge when evaluating the concept of quality of life in RA research, and for health professionals when promoting quality of life in patients with RA.
Disclosure of Interest None declared