PROMIS CAT in SLE Personal non-commercial use only

ABSTRACT. Objective. The aims of this study were to assess the construct validity and the test-retest reliability of Patient Reported Outcomes Measurement Information System (PROMIS) computerized adaptive tests (CAT) in patients with systemic lupus erythematosus (SL

The Feasibility And Validity Of Patient Reported Outcome Measurement Information System (Promis) In Systemic Lupus Erythematosus

Background: Accurate measurement of patient reported outcomes (PROs) is crucial to understanding how poor health impacts quality of life. PROs are particularly important in chronic diseases such as systemic lupus erythematosus (SLE), where disease manifestations are protean and objective measures may not capture patient centered domains. Patient Reported Outcome Measurement Information System (PROMIS) offers dynamic computerized adaptive tests (CATs) which have the potential to efficiently and accurately measure PROs that are relevant to SLE patients. Objectives: The aims of this study were to: 1) assess the feasibility of administering PROMIS CATS to SLE outpatients; 2) assess the validity of PROMIS CATs by correlating them with legacy PRO measures; 3) correlate PROMIS CATs with standard measures of SLE disease activity and organ damage; 4) assess retest reliability of PROMIS CATs. Methods: Adults meeting American College of Rheumatology SLE classification criteria were recruited from a SLE Center of Excellence. Subjects completed the Short Form-36 (SF-36), LupusQoL-US, and selected PROMIS CATs in domains of physical, mental and social health. SLE disease activity, flare, and damage were evaluated with the SELENA-SLEDAI and SLICC-ACR damage index. Subjects self-reported demographic information, relevant comorbid conditions, and their subjective experience completing the survey. PROMIS CATs were compared with disease activity, damage, and similar domains in legacy instruments using Spearman correlations (r). Retest reliability was evaluated among subjects reporting stable SLE activity at two assessments one week apart using intraclass correlation coefficients (ICC). Results: Of 238 outpatients approached, 204 (86%) completed at least one assessment, with 164 (80%) completing the assessment offsite. One hundred and sixty-two subjects (79%) completed a retest. There were no significant differences in demographic or clinical characteristics between those who completed the initial assessment and those who did not. Flaring patients completed the retest assessment less frequently (p = 0.03). Subjects found the questions relevant and validating. PROMIS CATs showed favorable performance characteristics and moderate to strong correlations with similar domains in both legacy instruments (r = 0.49 to 0.83, p < 0.0001). However, correlations between PROMIS CATs and the SELENA-SLEDAI and SLICC-ACR damage index were generally weak and statistically insignificant. PROMIS CAT retest ICCs were good to excellent, ranging from 0.72 to 0.88. Conclusion: To our knowledge, these data are the first to show that PROMIS CATs can be successfully administered to a diverse cohort of SLE patients at the point of care or remotely, and are valid and reliable for many SLE relevant domains. Importantly, PROMIS scores did not correlate well with physician-derived measures. This disconnect between objective signs and symptoms and the subjective patient disease experience underscores the crucial need to integrate PROs into clinical care to ensure optimal disease management

Virtual training of rheumatoid arthritis peer coaches in motivational interviewing skills and concepts of cardiovascular disease

Background: Peer coaching interventions are effective in helping individuals with chronic conditions understand their disease. Most peer coach training programs occur in person, which has become an obstacle during the COVID pandemic. We describe our experiences with virtual training for future peer coach interventions. Methods: Individuals with rheumatoid arthritis (RA) between 40 and 75 years of age were recruited and interviewed by the research team. We conducted seven virtual training sessions focused on four main points: Listen, Discuss, Practice, and Certify. The peer coaches provided feedback throughout the program, which was used to refine the training and intervention. A post-training focus group assessed satisfaction with the training program and intervention development process. Results: Four peer coaches (3 women, 1 man) were trained, including 2 Black and 2 White individuals with advanced degrees. Their ages ranged from 52 to 57, and their RA duration ranged from 5 to 15 years. An iterative process with the coaches and researchers resulted in a nine-week training program. Peer coaches reported satisfaction, confidence, and a preference for the virtual training format. Conclusion: This virtual peer coach training program was feasible and acceptable for coaches with advanced degrees during the global COVID-19 pandemic. Our approach represents an opportunity to adapt training that has been traditionally done in person. By doing so, our approach facilitates the recruitment and training of a diverse group of coaches and promotes sustainability