Feasibility and construct validation of the patient reported outcomes measurement information system in systemic vasculitis

Gunnar Tomasson*, John T. Farrar, David Cuthbertson, Carol A. McAlear, Susan Ashdown, Peter F. Cronholm, Jill Dawson, Don Gebhart, Georgia Lanier, Raashid A. Luqmani, Nataliya Milman, Jacqueline Peck, Joanna C. Robson, Judy A. Shea, Simon Carette, Nader Khalidi, Curry L. Koening, Carol A. Langford, Paul A. Monach, Larry MorelandChristian Pagnoux, Ulrich Specks, Antoine G. Sreih, Steven R. Ytterberg, Peter A. Merkel

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Objective. The Patient Reported Outcome Measurement Information System (PROMIS) is a collection of item banks of self-reported health. This study assessed the feasibility and construct validity of using PROMIS instruments in vasculitis. Methods. Data from a multicenter longitudinal cohort of subjects with systemic vasculitis were used. Instruments from 10 PROMIS item banks were selected with direct involvement of patients. Subjects completed PROMIS instruments using computer adaptive testing (CAT). The Medical Outcomes Study Short Form-36 (SF-36) was also administered. Cross-sectional construct validity was assessed by calculating correlations of PROMIS scores with SF-36 measures and physician and patient global scores for disease activity. Longitudinal construct validity was assessed by correlations of between-visit differences in PROMIS scores with differences in other measures. Results. During the study period, 973 subjects came for 2306 study visits and the PROMIS collection was completed at 2276 (99%) of visits. The median time needed to complete each PROMIS instrument ranged from 40 to 55 s. PROMIS instruments correlated cross-sectionally with individual scales of the SF-36, most strongly with subscales of the SF-36 addressing the same domain as the PROMIS instrument. For example, PROMIS fatigue correlated with both the physical component score (PCS; r = –0.65) and with the mental component score (MCS; r = –0.54). PROMIS physical function correlated strongly with PCS (r = 0.81) but weakly with MCS (r = 0.29). Weaker correlations were observed longitudinally between change in PROMIS scores with change in PCS and MCS. Conclusion. Collection of data using CAT PROMIS instruments is feasible among patients with vasculitis and has some cross-sectional and longitudinal construct validity.

Original languageEnglish
Pages (from-to)928-934
Number of pages7
JournalJournal of Rheumatology
Volume46
Issue number8
DOIs
Publication statusPublished - 1 Aug 2019

Bibliographical note

This work was supported by The Vasculitis Clinical Research Consortium (VCRC; U54 AR057319 and R01 AR 064153), which is part of the Rare Diseases Clinical Research Network, an initiative of the US Office of Rare Diseases Research, National Center for Advancing Translational Science (NCATS). The VCRC is funded through collaboration between NCATS, and the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and has received funding from the National Center for Research Resources (U54 RR019497). Additional support for this work was provided by a contract from the Patient-Centered Outcomes Research Institute (IP2PI000603).

Publisher Copyright:
The Journal of Rheumatology Copyright © 2019. All rights reserved.

Other keywords

  • Patient-reported outcome measures
  • Vasculitis

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