FRI0725-HPR Understanding the burden of rheumatoid arthritis using qualitative research: which impacts are not captured by patient-reported measures?. (12th June 2018)

• Record Type: Journal Article
• Authors: Shaw, Y.; Zhang, C.; Schumacher, R.; McDonald, D.; Simon, T.A.; Michaud, K.
• Is Part Of: Annals of the rheumatic diseases. Volume 77(2018)Supplement 2
• Page Start: 1810
• Page End: 1810
• Publication Date: 2018-06-12
• Subjects: Rheumatism -- Periodicals; 616.723005
• DOI: 10.1136/annrheumdis-2018-eular.3737
• Languages: English
• ISSNs: 0003-4967

Abstract

Abstract : Background: Existing measures of disease burden in rheumatoid arthritis (RA) include patient-reported measures (PRMs) of physical and mental functioning, symptoms and work disability. However, these measures may be inaccurate if interpreted by respondents in unintended ways and may not capture some impacts of RA of importance to patients. Objectives: To explore the perspectives of RA patients on PRMs used in The National Data Bank for Rheumatic Diseases (Forward) registry and to identify impacts of importance to patients that may not be captured by commonly used measures. Methods: Semi-structured ethnographic interviews were conducted with adult RA patients in the United States participating in Forward. Interviewees were asked to discuss the impact of RA on their lives and their perspectives on PRMs used in Forward. Interviews were audio-recorded and transcribed verbatim. Transcripts were analyzed for themes related to: 1) perspectives on PRMs, and 2) important impacts of RA. Results: We interviewed 18 patients aged 27–80 years, with RA durations of 4–40 years and Forward participation of 1–19 years. Participants' perspectives on PRMs fell into 4 categories (table 1). Several patients doubted that the PRMs adequately captured the severity of their symptoms. Important impacts of RA not measured by Forward included: expenditures on adaptive devices and measures, impact on life goals and activities (educational and career plans, family responsibilities, and valued activities) and interaction with stressful life events (such as family deaths). Conclusions: Challenges in interpreting and answering questions may reduce the accuracy of PRMs of RA symptoms. The PRMs discussed by participants may not fully capture the impact of RA on patients' financial burdens and on their pursuit of life goals and activities. Future efforts to improve the accuracy and comprehensiveness of burden of disease measurement in RA should help to address these issues. Use of qualitative methods (such as ethnography) may also help to illuminate aspects of living with RA that are not captured by existing PRMs. Disclosure of Interest: Y. Shaw Grant/research support from: Bristol-Myers Squibb, C. Zhang Grant/research support from: Bristol-Myers Squibb, Employee of: LIFT1428, R. Schumacher: None declared, D. McDonald Grant/research support from: Bristol-Myers Squibb, T. Simon Shareholder of: Bristol-Myers Squibb, Employee of: Bristol-Myers Squibb, K. Michaud Grant/research support from: Bristol-Myers Squibb, Pfizer and Rheumatology Research Foundation, Employee of: University of Nebraska Medical Center and National Data Bank for Rheumatic Diseases