Explaining the Discrepancy between Physician and Patient-Reported Measures of Disease Activity in Systemic Lupus Erythematosus

Background/Purpose: Patient-reported measures of disease activity provide useful adjuncts to physician-reported measures in identifying patients and pregnancies at greater risk for adverse outcomes. Comparatively little is known about the utility of these measures in SLE patients, and it is unclear how well these measures correspond to physician measures of disease, why they may differ, and if they work for the myriad presentations of SLE.

Methods: Data on patient-reported disease activity during pregnancy were collected on 178 patients with SLE enrolled in a prospective registry at a single academic center from 2008-2018. Physician assessment of disease activity was measured by physician global assessment (PGA) and compared to patient-reported measures in patients with SLE. The patient-reported measures used include domains of the SF-36, as well as visual analog scales assessing pain and general health. We used univariate and multivariable regression models to assess the strength of the relationship between patient and physician-reported measures of disease activity.

Results: Among 178 women with SLE, the mean age was 30 and 49% were black. There was a weak but significant correlation between measures of general health and PGA (R² SF-36=0.11; visual analog scale=0.09). However, this relationship was not consistent across all severity levels of SLE. In particular, in women with internal organ disease (PGA 2-3) there was no relationship between patient assessment of general health and PGA (R²=0.0). In contrast, those with less severe disease showed a stronger correlation between patient-reported measures and PGA (R² SF36=0.18, VAS=0.13). Pain was the most important variable correlating with patient-reported disease (R² = 0.5).

Conclusion: Patient-reported measures of disease activity such as general health appear to correlate with physician measures; however, this relationship only holds for those with lower levels of disease activity. For women with internal organ disease, patient self-assessment of health had no relationship with the physician assessment. In addition, our findings suggest that pain is one of the primary symptoms driving patients’ health assessments. Our findings continue to show the need for the development of patient-reported measures that more accurately reflect lupus disease activity, particularly among those with the most dangerous manifestations of the disease.