Background/Purpose: Discordance between physicians’ and patients’ perceptions of disease severity can negatively impact treatment and disease outcomes; this has not yet been studied in children and adolescents with systemic lupus erythematosus (SLE). Neuropsychiatric symptoms, including depression and anxiety, can be present in up to 65% of adolescents with SLE. We propose to investigate the incidence of mood and behavioral changes, and its association with discordance between patient and physician perceptions of disease severity.

Methods: This is a multicenter pilot study conducted between September 2019 and April 2021. Patients over 12 years of age, diagnosed with SLE before their 19th birthdays, and who met ACR or SLICC Lupus classification criteria, were enrolled from two tertiary pediatric rheumatology centers in NY (one urban and one suburban). Data including demographics, disease manifestations, medications, and disease severity were collected. Patients completed standardized surveys assessing depression and various measures of quality of life. Global scores were obtained from individual patients and providers, analyzed via two-tailed t-tests, and compared with survey data using Pearson’s correlations. A p-value of < 0.05 was considered significant.

Results: A total of 58 patients were enrolled, 40 from the urban center and 18 from the suburban center. Overall, the mean age at enrollment was 19 (13-23) years, with 81% female. The two cohorts identified ethnicity and race as 47% Hispanic, 38% Black, 6% White, and 3% as Alaskan Native/American Indian. There were no differences between the two cohorts on administered Kidscreen-52, Adverse Childhood Experience, and most Promis-25 survey subsections specifically focused on psychosocial factors, fatigue, mood, and cognition. However, the suburban cohort demonstrated higher depression scores on CES-D (mean 24.05, p=0.008), indicative of severe depression, and higher emotional scores on PedsQL (mean 9.58, p=0.01). The overall mean patient global score was 3.0 (range 0-9), and physician global was 1.44 (range 0-7). Patient/physician discordance was noted to be higher in the urban-based institution (p=NS), possibly indicating that patient perception of disease was often more severe than provider assessment. Discordance was also associated with items from PedsQL school (r=0.41, p< 0.05) and PROMIS depression subsections (r=0.34, p< 0.05).

Conclusion: We found that pediatric SLE patients in an urban based center demonstrated higher patient/physician discordance when compared to a suburban cohort. However, adolescents with SLE demonstrated higher rates of depression and emotional changes at a suburban-based center, despite physician perception of stable disease.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-impact-of-patient-provider-discordance-on-changes-on-mood-and-behavior-in-adolescents-with-systemic-lupus-erythematosus/