Abstract

The onset of rheumatic disease affects each patient differently and may impact quality of life with progression. We investigated the relationship between patient-reported outcome measure (PROM) scores and organ damage in patients with recent-onset systemic lupus erythematosus (SLE) and those with early rheumatoid arthritis (RA). Patients with recent-onset SLE without prior organ damage from the Clinical Lupus Register in Northeastern Gothia and patients with early RA from the observational 2nd Timely Interventions in Early RA study, Sweden, were included. Systemic Lupus International Collaborating Clinics/American College of Rheumatology damage index (SDI) was used to assess organ damage. PROM (visual analog scale [VAS]: pain, fatigue, well-being, Health Assessment Questionnaire, and EQ-5D-3L) scores were captured at months 0, 6, 12, 24, 36, 48, and 60 after diagnosis. Statistical tests included Pearson correlation coefficients and t-tests. Forty-one patients with recent-onset SLE and 522 with early RA were included. Numerical differences were seen in age and sex. PROMs were worse for patients with RA versus SLE but improved by month 6 following diagnosis, while SLE PROMs remained stable. The incidence of organ damage in SLE was 13.6 per 100 patient-years. SDI significantly correlated with EQ-5D-3L (− 0.48, P = 0.003), VAS fatigue (0.44, P = 0.009), and well-being (0.41, P = 0.01) at month 24. As illustrated, the complexity of disease burden in patients with SLE is clear and may result from disease-related multiorgan system effects and slower symptom resolution compared with RA. This underscores the need for improved multiprofessional interventions to manage all aspects of SLE.Key Points• We observed an evident discrepancy in patient-reported outcome measures (PROMs) between patients with recent-onset SLE and early RA.• Despite differences in PROMs between patients with recent-onset SLE and early RA, both groups had prominent self-reported disability during the study period.• PROM scores for patients with RA were generally worse than those with SLE but improved by month 6, whereas PROM scores for patients with SLE remained stable over time.• Our findings underline the need of new therapeutic options and interventions for SLE disease management, including pharmacologic and multiprofessional aspects.

Highlights

  • Systemic lupus erythematosus (SLE) is a chronic disease with multiorgan involvement that may result in irreversible organ damage [1, 2]

  • Using longitudinal data from a well-characterized Swedish cohort, we show that patients with SLE had lower, but still affected, patient-reported outcome measure (PROM) scores compared with patients with rheumatoid arthritis (RA) at baseline

  • We previously demonstrated associations between Health Assessment Questionnaire (HAQ) scores and quality of life (QoL) in patients with SLE; greater limitations in activity level were associated with lower QoL [2]

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Summary

Introduction

Systemic lupus erythematosus (SLE) is a chronic disease with multiorgan involvement that may result in irreversible organ damage [1, 2]. Despite improved treatments and survival, SLE significantly affects quality of life (QoL) and. The worldwide incidence and prevalence of SLE vary significantly between populations, with most patients who are women of childbearing age [3]. Prevalence estimates in Sweden range from 39 to 85 cases per 100,000 persons (0.04–0.10%) [3]. A German study showed that healthcare resource utilization and costs for incident SLE cases were higher than prevalent cases [4], emphasizing the need for improved healthcare interventions as the patient experience changes over time. Apart from direct costs, Swedish data indicate that indirect costs are substantial in established SLE [5]

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