Elaboration of the preliminary Rheumatoid Arthritis Impact of Disease (RAID) score: a EULAR initiative

Abstract

Background: Current response criteria in rheumatoid arthritis (RA) usually assess only three patient-reported outcomes (PROs): pain, functional disability and patient global assessment. Other important PROs such as fatigue are not included. Objective: To elaborate a patient-derived composite response index for use in clinical trials in RA, the RA Impact of Disease (RAID) score. Methods: Ten patients identified 17 domains or areas of health relevant for inclusion in the score, then 96 patients (10 per country in 10 European countries) ranked these domains in order of decreasing importance. The seven most important domains were selected. Instruments were chosen for each domain after extensive literature research of psychometric properties and expert opinion. The relative weight of each of the domains was obtained from 505 patients who were asked to ''distribute 100 points'' among the seven domains. The average ranks of importance of these domains were then computed.

The patient perspective on remission in rheumatoid arthritis: ‘You've got limits, but you're back to being you again’

“…A recent cooperation between patients and professionals resulted in a new patient-derived score to capture impact of RA on daily life (RAID). [25] The domains captured by the RAID, ie pain, daily functioning, fatigue, sleep, physical and emotional wellbeing and coping, were all of importance to the perception of remission as well, although patient perceived remission may not necessarily be represented by a low score on the RAID: RAID specifically measures impact of RA, while remission is a larger concept, where low impact leads to a return to normality, which is a complex concept in patients with a chronic disease. [26] The new definition of remission in RA has been hampered by the lack of adequate data on the patient perspective of remission.…”

Psychological Factors Associated with Response to Treatment in Rheumatoid Arthritis

“…The RA Impact of Disease (RAID) score conveys patients' views on the impact of RA [78]. The more than 500 patients who were involved in the development of the RAID score identified 7 major domains as representing the overall burden of the disease: pain (21%), functional disability (16%), fatigue (15%), emotional well-being (12%), sleep disturbance (12%), coping (12%), and physical well-being (12%) [79].…”

Utility‐based outcomes made easy: The number needed per quality‐adjusted life year gained. An observational cohort study of tumor necrosis factor blockade in inflammatory arthritis from Southern Sweden

“…A few, such as the Stanford Health Assessment Questionnaire (HAQ) (1), were developed for a specific diagnosis (for the HAQ, rheumatoid arthritis [RA]) but have also been applied in other diseases (2,3), and by some the HAQ has even been suggested to represent a generic measure of function (4). Many activity indices, such as the Disease Activity Score (5) and Simplified Disease Activity Index (6), consist of patient-and evaluator-derived measures as well as of a laboratory measure of inflammation, whereas others are comprised solely of patient-derived data, such as the Patient Activity Scale or Rheumatoid Arthritis Impact of Disease score (7,8). All of these are dependent both on inflammation and tissue damage (joint damage/erosions).…”