Background/Purpose:

Patient Reported Outcome (PRO) measures for Quality of Life (QoL) in patients with lupus are useful supplements to the physician-derived indices of disease activity in estimating disease-impact and true patient-burden. PRO tools in pediatric lupus to date either capture QoL insufficiently or are too time-consuming to be used in routine clinical practice. Lupus Impact Tracker (LIT) is a practical, brief, 10-item, unidimensional, PRO tool, validated in adults, covering the concepts of cognition, lupus medications, physical health, pain/fatigue impact, emotional health, body image, and planning/desires/goals. We propose to determine the psychometric properties of LIT and its correlation with physician derived disease activity in pediatric and young adult patients with lupus.

Methods:

This is a prospective, observational, pilot study where patients aged between 12 and 25 years, fulfilling the 1997 ACR classification criteria for SLE, were enrolled. Patients completed LIT alongside 3 consecutive, routine clinical visits. Data were collected on demographics, and clinical and laboratory disease-parameters including disease activity (SLEDAI) and damage (SLICC-ACR) indices.

Intraclass correlation coefficients (ICC) were calculated between serial LIT scores for test-retest reliability. Spearman correlation coefficients were calculated between LIT scores and SLEDAI and Kruskal-Wallis tests for association between LIT scores and SLEDAI-based groups (mild/moderate/severe). Using a Bonferroni type adjustment, a p-value <0.01 was considered significant.

Results:

Of 28 patients completing 3 visits, 79% were female, 36% African American, 36% Asian, and 14% Latino. The mean (SD) age at enrollment was 17.25 (2.7) years, with a mean (SD) disease duration of 4.02 (2.79) years. Mean (SD) SLEDAI scores were 4.04 (3.3), 3.61 (2.8), and 4.29 (3.8) for the first, second and third visits. Mean (SD) LIT scores were 31.52 (27.2), 23.66 (23.4), and 24.91 (24.6) for the first, second and third visits. Intra-class correlation (ICC) between LIT scores at visit 1 and visit 2 was 0.696, and between LIT scores at visit 2 and 3 was 0.815, demonstrating moderate to high test-retest reliability. LIT and SLEDAI scores were moderately correlated at visit 3 with Spearman correlation coefficient of 0.69, but only weakly at visits 1 and 2 (0.205 and 0.203 respectively). No significant association was found between LIT and SLEDAI-severity groups (Kruskal Wallis Pr=0.28, 0.20, 0.74 at visits 1, 2 and 3 respectively).

Conclusion:

This is the first pediatric study to show LIT as a simple, practical instrument to assess QoL, with moderate to high test-retest reliability. In conformity with some studies in adult lupus, it has only low to moderate correlation with physician derived disease activity. While this can be partly due to inclusion of patients with stable and low SLEDAI scores in this pilot, it also supports that PRO measures are supplementary rather than surrogate to disease activity indices based on clinical and serologic parameters alone. Results of correlation of LIT scores with other validated pediatric PRO measures will be reported next with a larger sample size.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/lupus-impact-tracker-lit-as-a-new-tool-in-assessing-patient-reported-outcome-in-pediatric-lupus/