Two-year follow-up of neuropsychiatric symptoms in patients with systemic autoimmune rheumatic diseases: longitudinal insights on depression, anxiety, memory and adaptation in the INSPIRE cohort

Background: To date, studies of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases (SARDs) have largely been cross-sectional. Our longitudinal study with patients with SARDs from the international INSPIRE cohort aimed to advance knowledge of changes in patient-reported neuropsychiatric symptoms and adapting over time.

Methods: We conducted an observational cohort study analysing longitudinal data from the international INSPIRE (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology Patient Experiences) research project. Self-reported validated survey measures for anxiety (GAD-7), depression (PROMIS SF8), and memory (EMQ-R) were compared between baseline (2022) and follow-up surveys 2 years later (2024). We invited all participants who had provided their contact details and consented for the follow-up survey. Our co-produced “ADAPT” instrument was used to assess and compare changes in how people with SARDs adapt to living with their disease over time. T-tests, Kruskal–Wallis and Mann–Whitney U tests were used to assess differences across groups for changes in study measures. Sociodemographic and disease differences were controlled for by generalised linear modelling in adjusted analyses. Patients with polymyalgia rheumatica (PMR) made up the reference group because the Kruskal–Wallis test established no significant difference between the PMR and the control group for memory, depression and anxiety scores on the baseline dataset.

Findings: The modal within-person change between baseline (BL) and follow-up (FU) for the N = 742 participants was zero for all 3 validated tools. Significant improvements at group level over two years were identified for memory scores (BL:16.14 to FU: 13.96, p = 0.002), and all four ADAPT measures (p < 0.05), whereas mean depression (BL:16.61 to FU:16.21, p = 0.303) and anxiety (BL:5.83 to FU:5.36, p = 0.073) scores were unchanged over time. Significant improvements in memory scores were observed in SLE (p = 0.022) and RA/IA (p = 0.009), and in those diagnosed (at baseline) > 10 years (p = 0.016) and between 6 and 9 years (p = 0.020).

Interpretation: This study provides evidence against the expectation of progressive memory impairment in most cases in SARDs, including SLE. Lack of improvement in mean depression and anxiety scores over time suggests that many patients with SARDs may benefit from more proactive/assertive rheumatologic disease control, psychiatric intervention, and/or psychosocial support. Early and effective SARDs disease control is required, with timely psychiatric intervention and psychosocial support provided, particularly for the newly diagnosed.