Patient perspectives on long-term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group

José B Negrón, Maria A Lopez-Olivo, Loreto Carmona, Robin Christensen, Francesca Ingegnoli, Natalia V Zamora, Jorge I Gamez-Nava, Laura Gonzalez-Lopez, Vibeke Strand, Niti Goel, Tiffany Westrich-Robertson, Maria E Suarez-Almazor

Abstract

OBJECTIVES: To identify patient-centered domains with long-term relevance to people with rheumatoid arthritis (RA).

METHODS: We conducted semi-structured individual cognitive interviews of patients with RA with at least five years of disease duration, sampled from five different countries (United States, Italy, Spain, Mexico, and Argentina). Participants were encouraged to discuss their long-term concerns regarding RA. Interviews were transcribed and analyzed using qualitative content analysis within a constructivist/interpretivist theoretical framework.

RESULTS: Twenty-eight participants were interviewed, 24 were women. Six main themes, representing important aspects of the daily life of people with RA were generated: (i) Living with symptoms and functional limitations, (ii) Lack of participation, (iii) Partner and family issues, (iv) Risk of damage to vital organs, (v) Coping strategies, and (vi) Healthcare concerns, primarily expressed by participants from non-European countries lacking universal healthcare coverage. In addition, participants discussed the importance of contextual factors and how they impact long-term outcomes. These included attitudes towards disease, social support, or financial burdens.

CONCLUSIONS: We identified six domains of importance to people with RA that are seldom measured in longitudinal registries and should be considered in patient-centered longitudinal studies.

Original languageEnglish
Article number152028
JournalSeminars in Arthritis and Rheumatism
Volume58
Pages (from-to)152028
ISSN0049-0172
DOIs
Publication statusPublished - Feb 2023

Keywords

  • Humans
  • Female
  • Male
  • Arthritis, Rheumatoid/diagnosis
  • Qualitative Research
  • Longitudinal Studies
  • Registries
  • Italy

Fingerprint

Dive into the research topics of 'Patient perspectives on long-term outcomes in rheumatoid arthritis. A qualitative study from the OMERACT patient outcomes in longitudinal studies working group'. Together they form a unique fingerprint.

Cite this