Interviews conducted with patients with rheumatoid arthritis (RA) revealed 6 important aspects of daily life that are rarely measured in RA research.
For patients with long-term rheumatoid arthritis (RA), there are 6 main aspects of daily life that are important to patients yet rarely included in research, according to a study published in Seminars in Arthritis and Rheumatism.
To come to this finding, the study authors separately interviewed 28 participants, 24 of which were women, who have lived with RA for at least 5 years. All participants were from the United States, Italy, Spain, Mexico, or Argentina.
During these semi-structured interviews, participants were encouraged to talk about any long-term concerns about RA.
The interviews revealed 6 important aspects of daily life for people with long-term RA that randomized controlled trials (RCTs) and prospective cohort studies need to focus on more:
Each theme also had subcategories. For living with symptoms and limitations, interview participants noted both physical and physiological symptoms, ranging from joint stiffness to anxiety cause by RA.
Further, lack of participation was mentioned in both social and work contexts.
“Participants who expressed having support from family and/or friends who understood the disease mentioned that they were able to adjust to their new reality,” the authors wrote. “Those participants who felt isolated from social life perceived that loss of autonomy and a lack of empathy by friends and family members as major contributors to their isolation.”
Increased feelings of isolation were also tied to increased psychological discomfort. As for work settings, most participants said they had to stop working because of their RA, and those who maintained their jobs said it helped when their work duties were adjusted to fit their abilities and limitations due to RA.
The interviews also revealed the financial burden of RA, which was mainly expressed by participants from non-European countries lacking universal health care coverage.
High medical care and medication costs were a major financial concern among this group, who said they created barriers when trying to engage in healthy behaviors such as adhering to RA treatments and making beneficial lifestyle changes.
Interview participants also emphasized the importance of contextual factors such as attitude towards disease, social support, and financial burdens, and how they can affect long-term outcomes of RA.
While the participant group was small, experiences and opinions were similar among the group, warranting further research.
“Our findings indicate the need to measure various patient-centered outcomes and outcome influencing contextual factors in long-term longitudinal observational studies to better capture the complexities of living with RA,” the authors concluded.
Negrón JB, Lopez-Olivo MA, Carmona L, et al. Patient perspectives on long-term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group. Semin Arthritis Rheum. Published online May 19, 2022. doi:10.1016/j.semarthrit.2022.152028