Background/Purpose: Patient and provider discordance can negatively impact medication adherence and disease outcomes in pediatric lupus. Functional status is known to greatly affect perception of disease activity and outcomes. We aim to investigate discordance in providers’ and patients’ assessment of functional status in adolescents with lupus, and relation to disease activity.

Methods: This cross-sectional study enrolled adolescent lupus patients between 2019 and 2022. Functional status was assessed by providers using the American College of Rheumatology classification of global functional status (ACR), and patients using subscales of the KIDSCREEN, PedsQL and PROMIS surveys. Clinical data including disease activity score (SLEDAI) and provider global assessment (PGA) were also collected. All analyses were corrected with Benjamini-Hochberg tests. Pearson and Spearman correlations were run among study variables. Mann-Whitney U tests examined differences in ACR groups on functional status variables. Kruskal Wallis analyses were conducted on SLEDAI, functional status ratings and patient and provider global ratings.

Results: 96 participants were enrolled, 77% female, with mean age of 17 (range 12-21) years and mean duration of diagnosis 3.36 (range < 1-12) years. Mean SLEDAI was 5.61 (range 0-38), indicating at least moderate disease activity. Eighty-seven subjects were categorized by providers as ACR Class I (able to perform all daily activities), and 7 as ACR Class II or III (at least some limitation to perform usual daily activities). Norm comparisons with one-sample T-tests found patients reported more fatigue but better physical function on PROMIS subscales, scored worse in all subscales of KIDSCREEN except bullying, and better in physical, emotional, social and school function subscales of the PedsQL compared to population means (p< .001). Once adjusted, the ACR categories did not significantly differentiate patients based on any of the patient reported functional subscales. SLEDAIs significantly correlated (Benjamini-Hochberg adjusted to p< .002) with PGA and the PedsQL social function subscale, but no other variables. There was no significant differentiation (Class II/ Class III ACR vs. Class I) on patient-rated functional status with the KIDScreen, PROMIS or PedsQL., except for pain intensity (p=.001). There were no differences for the SLEDAI, absolute discordance, or the patient global disease rating but there was a significant difference in the provider global disease rating (p≤.001).

Conclusion: Adolescent lupus patients’ assessment of function as captured on KIDSCREEN, PedsQL, and PROMIS subscales were more varied than providers’ assessments using the ACR. SLEDAI correlated with PGA, but not with patient assessments. These findings suggest that provider-based assessments, may not adequately reflect the functional status of adolescents with lupus as experienced by the patients themselves. While disease activity measures like SLEDAI correlate with provider assessments, they do not align with patient-reported functional outcomes. This discrepancy highlights the need for more comprehensive and patient-centered tools to assess functional status in this population.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/differences-in-patient-and-provider-perception-of-functional-status-in-adolescents-with-lupus/