Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study

Abstract Objective To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29 scores, a composite patient-reported outcome (PRO) measure, through the...

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Main Authors: Kai Sun, Amanda M. Eudy, Nathaniel Harris, David S. Pisetsky, Lisa G. Criscione-Schreiber, Rebecca E. Sadun, Jayanth Doss, Megan E. B. Clowse, Jennifer L. Rogers
Format: Article
Language:English
Published: SpringerOpen 2023-12-01
Series:Journal of Patient-Reported Outcomes
Subjects:
Online Access:https://doi.org/10.1186/s41687-023-00678-5
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author Kai Sun
Amanda M. Eudy
Nathaniel Harris
David S. Pisetsky
Lisa G. Criscione-Schreiber
Rebecca E. Sadun
Jayanth Doss
Megan E. B. Clowse
Jennifer L. Rogers
author_facet Kai Sun
Amanda M. Eudy
Nathaniel Harris
David S. Pisetsky
Lisa G. Criscione-Schreiber
Rebecca E. Sadun
Jayanth Doss
Megan E. B. Clowse
Jennifer L. Rogers
author_sort Kai Sun
collection DOAJ
description Abstract Objective To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29 scores, a composite patient-reported outcome (PRO) measure, through the lens of the model. Methods Patients completed PROMIS-29 and the polysymptomatic distress scale (PSD). Rheumatologists completed the SLE disease activity index (SLEDAI), and physician’s global assessments (PGAs) for Type 1 and 2 SLE. We defined Type 1 SLE using SLEDAI, Type 1 PGA, and active nephritis, and Type 2 SLE using PSD and Type 2 PGA. We compared PROMIS-29 T-scores among Type 1 and 2 SLE groups and explored whether PROMIS-29 can predict Type 1 and 2 SLE activity. Results Compared to the general population, patients with isolated Type 1 SLE reported greater pain and physical dysfunction but less depression and improved social functions; patients with high Type 2 SLE (irrespective of Type 1 activity) reported high levels of pain, fatigue, and social and physical limitations. Patients with minimal Type 1 and 2 SLE had less depression and greater physical functioning with other domains similar to national norms. PROMIS-29 predicted Type 2 but not Type 1 SLE activity. Conclusion PROMIS-29 similarities in patients with high Type 2 SLE, with and without active Type 1 SLE, demonstrate the challenges of using PROs to assess SLE inflammation. In conjunction with the Type 1 and 2 SLE model, however, PROMIS-29 identified distinct symptom patterns, suggesting that the model may help clinicians interpret PROs.
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spelling doaj.art-62bf77c2e588407993cc3cbdfbb1f1c32023-12-24T12:20:21ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202023-12-01711810.1186/s41687-023-00678-5Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional studyKai Sun0Amanda M. Eudy1Nathaniel Harris2David S. Pisetsky3Lisa G. Criscione-Schreiber4Rebecca E. Sadun5Jayanth Doss6Megan E. B. Clowse7Jennifer L. Rogers8Division of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineDivision of Rheumatology and Immunology, Department of Medicine, Duke University School of MedicineAbstract Objective To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29 scores, a composite patient-reported outcome (PRO) measure, through the lens of the model. Methods Patients completed PROMIS-29 and the polysymptomatic distress scale (PSD). Rheumatologists completed the SLE disease activity index (SLEDAI), and physician’s global assessments (PGAs) for Type 1 and 2 SLE. We defined Type 1 SLE using SLEDAI, Type 1 PGA, and active nephritis, and Type 2 SLE using PSD and Type 2 PGA. We compared PROMIS-29 T-scores among Type 1 and 2 SLE groups and explored whether PROMIS-29 can predict Type 1 and 2 SLE activity. Results Compared to the general population, patients with isolated Type 1 SLE reported greater pain and physical dysfunction but less depression and improved social functions; patients with high Type 2 SLE (irrespective of Type 1 activity) reported high levels of pain, fatigue, and social and physical limitations. Patients with minimal Type 1 and 2 SLE had less depression and greater physical functioning with other domains similar to national norms. PROMIS-29 predicted Type 2 but not Type 1 SLE activity. Conclusion PROMIS-29 similarities in patients with high Type 2 SLE, with and without active Type 1 SLE, demonstrate the challenges of using PROs to assess SLE inflammation. In conjunction with the Type 1 and 2 SLE model, however, PROMIS-29 identified distinct symptom patterns, suggesting that the model may help clinicians interpret PROs.https://doi.org/10.1186/s41687-023-00678-5Systemic lupus erythematosusPatient-reported outcomesHealth-related quality of life
spellingShingle Kai Sun
Amanda M. Eudy
Nathaniel Harris
David S. Pisetsky
Lisa G. Criscione-Schreiber
Rebecca E. Sadun
Jayanth Doss
Megan E. B. Clowse
Jennifer L. Rogers
Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study
Journal of Patient-Reported Outcomes
Systemic lupus erythematosus
Patient-reported outcomes
Health-related quality of life
title Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study
title_full Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study
title_fullStr Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study
title_full_unstemmed Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study
title_short Using PROMIS-29 to determine symptom burdens in the context of the Type 1 and 2 systemic lupus erythematosus (SLE) model: a cross sectional study
title_sort using promis 29 to determine symptom burdens in the context of the type 1 and 2 systemic lupus erythematosus sle model a cross sectional study
topic Systemic lupus erythematosus
Patient-reported outcomes
Health-related quality of life
url https://doi.org/10.1186/s41687-023-00678-5
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