Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Nov:274:114216.
doi: 10.1016/j.jpeds.2024.114216. Epub 2024 Jul 27.

Discordant Perception of Disease Activity Between Providers and Adolescents with Systemic Lupus Erythematosus: A Cohort Study

Affiliations

Discordant Perception of Disease Activity Between Providers and Adolescents with Systemic Lupus Erythematosus: A Cohort Study

Zanab Mian et al. J Pediatr. 2024 Nov.

Abstract

Discordance in perception of disease activity between adolescent patients with lupus and their providers may influence disease outcomes. We found that patients endorsed higher perceptions of disease activity than providers. Discordance was present at all levels of disease activity, particularly in patients with high activity, nephritis, and/or taking corticosteroids or mycophenolate mofetil.

Keywords: Pediatric rheumatology; discordance; outcome measures; systemic lupus erythematosus.

PubMed Disclaimer

Conflict of interest statement

Declaration of Competing Interest K.K.R., K.R., and S.B. are the recipients of grant funding (#2019-10021) from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). T.B.R. is supported by the Childhood Arthritis and Rheumatology Research Alliance/Arthritis Foundation Career Development Award and the National Institute of Arthritis and Musculoskeletal Skin Diseases (NIAMS) (K23AR080803). The authors declare no conflicts of interest.

Figures

Figure.
Figure.
A, Provider GA stratified by SLEDAI scores. B, Patient GA stratified by SLEDAI scores. C, Absolute discordance in perception of disease activity between adolescents with lupus and their providers, stratified by SLEDAI scores.

References

    1. Brunner HI, Higgins GC, Wiers K, Lapidus SK, Olson JC, Onel K, et al. Prospective validation of the provisional criteria for the evaluation of response to therapy in childhood-onset systemic lupus erythematosus. Arthritis Care Res 2010;62:335–44. 10.1002/acr.20103 - DOI - PMC - PubMed
    1. Yen JC, Abrahamowicz M, Dobkin PL, Clarke AE, Battista RN, Fortin PR. Determinants of discordance between patients and physicians in their assessment of lupus disease activity. J Rheum 2003;30:1967–76. - PubMed
    1. Devilliers H, Amoura Z, Basencenot JF, Bonnotte B, Pasquali JL, Wahl D, et al. Responsiveness of the 36-item short form health survey and the Lupus quality of life questionnaire in SLE. Rheumatology 2015;54:940–9. 10.1093/rheumatology/keu410 - DOI - PubMed
    1. Golder V, Ooi JJY, Antony AS, Ko T, Morton S, Kandane-Rathnayake R, et al. Discordance of patient and physician health status concerns in systemic lupus erythematosus. Lupus 2018;27:501–6. 10.1177/0961203317722412 - DOI - PubMed
    1. Giancane G, Campone C, Gicchino MF, Alongi A, Bava C, Rosina S, et al. Determinants of discordance between criteria for inactive disease and low disease activity in juvenile idiopathic arthritis. Arthritis Care Res (Hoboken) 2021;73:1722–9. 10.1002/acr.24415 - DOI - PubMed

Substances