Thu0099 development of a New Patient-Generated Outcome Measure to Identify Disease-Specific Distress in People With Rheumatoid Arthritis

Abstract

BackgroundRheumatoid Arthritis (RA) is a progressive inflammatory disease which causes pain, joint damage and disability. Patients with RA may experience psychological distress in addition to their physical symptoms. They may also experience disease-specific distress (DSD), which is related to the burden of living with their life-long illness. This phenomenon has been identified in patients with other long-term conditions, e.g. cancer, Irritable Bowel Disease, and Diabetes. In type 1 and 2 diabetes elevated DSD is associated with poorer clinical outcomes, and effective interventions can reduce diabetes distress. Patient involvement in the development of patient generated outcome measures (PGOMs) is important, as they may have different perspectives about their health condition that researchers and/or health care professionals may not have considered. Previous secondary data analysis of patient interviews has suggested that DSD does seem to exist in people with RA, as an entity distinct from other forms of psychological difficulties.ObjectivesThe aim of this study was to develop a PGOM, based on previously reported domains of distress, to identify DSD in people with RA for use in clinical and research practice. The study aimed to involve patients in the development of the new outcome measure.MethodsA three-phase qualitative study was conducted. In Phase 1 items were generated from secondary data analysis of patient interviews. In Phase 2, a focus group of people with RA were consulted with the aim to establish initial face and content validity of the measure and perform item reduction. In Phase 3, individual cognitive interviews (n=9) with people with RA were conducted to further establish face and content validity of the Scale, refine items if necessary and ensure the questionnaire =made sense to participants. A psychometrician was consulted to consider the development of the new Scale.ResultsIn Phase 1, 44 items were initially created to form the Rheumatoid Arthritis Distress Scale (RADS). After Phase 2 and 3 focus group and cognitive interviews respectively, items were reduced from 44 to 39 and three additional supplementary questions were created, to include items such as time since diagnosis and disease activity. Dimensions were classified into five domains of RA distress. Overall participants reported the content of the RADS to be clear and relevant, and that DSD is a valid concept in RA, distinct from clinical depression or anxietyConclusionDSD appears to be an important concept in RA. The 39-item RADS currently demonstrates acceptable face and content validity in this patient group. It may be beneficial to establish face and content validity in a more diverse patient sample before proceeding with further psychometric testing. The RADS may be a useful tool for healthcare professionals to identify DSD in patients with RA. Direct patient involvement and their commitment have been instrumental in the development of new outcome measures.AcknowledgementThis work was supported by Kings College London and submitted...