Responsiveness of the Patient‐Reported Outcomes Measurement Information System Global Health Short Form in Outpatients With Systemic Lupus Erythematosus

Abstract

Objective To evaluate the longitudinal responsiveness (sensitivity to change) of the Patient‐Reported Outcomes Measurement Information System (PROMIS) Global Health Short Form (PROMIS10) in outpatients with systemic lupus erythematosus (SLE). Methods Outpatients with SLE who were receiving care at an academic medical center completed the PROMIS10 at 2 visits that were a minimum of 1 month apart. Responsiveness of the PROMIS10 global physical and mental health domains to Patient‐Reported improvement or deterioration of health status was evaluated, as measured by standard validated instruments. Effect sizes of changes in PROMIS10 scores between visits were evaluated using Kruskal‐Wallis testing. Results A total of 223 SLE patients enrolled and completed baseline surveys, with 186 (83.4%) completing a second set of questionnaires. The PROMIS10 demonstrated mild‐to‐moderate responsiveness to Patient‐Reported improvement (effect size 0.29) and worsening (effect sizes –0.27 and –0.54) of health status for both global physical health and global mental health. Changes in the PROMIS10 correlated poorly with changes in physician‐reported measures of disease activity. Conclusion The PROMIS10 showed responsiveness over time to Patient‐Reported changes in SLE health status, but not physician‐assessed changes. These data suggest that the PROMIS10 can be used to efficiently measure and monitor important aspects of the SLE patient experience that are not captured by standard physician‐derived metrics. Further studies are needed to evaluate the role of the PROMIS10 in optimizing longitudinal disease management in SLE and to determine its responsiveness in other chronic health conditions.

Impact of Clostridioides difficile infection on patient-reported quality of life

“…Moreover, PROMIS GH scores reported by CDI patients in this study are lower or comparable to other medical conditions. [14][15][16][17][18][19] One caveat for the comparison of these results is that most studies examining HR-QoL are done in the outpatient setting, whereas our study was conducted in the inpatient setting with acutely ill patients. This distinction is highlighted by the fact that the Cdiff32 scores reported by hospitalized patients in our study appear to be lower compared to those reported in the original study by Garey et al, 9 in which preliminary validation was conducted in outpatients.…”

Adult Measures of General Health and Health‐Related Quality of Life

“…Responsiveness was further investigated in 186 patients with systemic lupus erythematosus, using anchors based on self‐ and clinician‐reported global assessments of change. Small to moderate decreases in scores were observed in patients reporting worsening (GPH: ES = −0.27, SRM = −0.37; GMH: ES = −0.54, SRM = −0.68), whereas small increases in scores (GPH: ES = 0.29, SRM = 0.41; GMH: ES = 0.29, SRM = 0.36) were observed in patients reporting improvement . Finally, the PROMIS‐GH version 1.1, as measured in a population of 156 patients with rheumatoid arthritis, ( n = 106 at 12‐week follow‐up visit) showed significant associations between GPH change scores and changes in several disease activity measures, including the Clinical Disease Activity Index (CDAI), tender joints, patient global assessment, and assessor global assessment (standardized β coefficients range from −0.21 to −0.30).…”

The Patients' Perspective of Important Glucocorticoid Effects

“…The PROMIS scores indicate the included participants are generally healthy with global mental and physical health within 1 SD above the mean of the US population, suggesting stable disease, without significant limitations in health-related quality of life. Additionally, in a registry study of patients with SLE, Kasturi et al 22 shows that PROMIS Global-10 correlates well with the patient's perspective of health status. Furthermore, to our knowledge, this is the first study using NGT to ask patients with SLE and myositis of both the benefits and harms of GCs.…”

“…Scores are reported as percentiles, with higher scores indicating better health-related quality of life. The PROMIS questionnaire does not correlate well with physician-rated disease activity but is sensitive to change in patient-reported health status and health-related quality of life 22 . Additional information regarding comorbidities, organ involvement, and medication use was obtained by chart review.…”