Background/Purpose: Systemic lupus erythematous (SLE) is a heterogeneous disease with high morbidity and mortality affecting approximately 20-150 cases per 100,000 people. The risk of early death in patients with SLE is two times greater than the general population. Long-term SLE treatment is often complex with frequent medication changes, which are challenging especially given the cognitive and neuropsychiatric deficits affecting 25-60% of lupus patients. Across wide spectrums of educational backgrounds, patients need multiple skill sets to understand health recommendations, manage their disease, and avoid poor health outcomes. Health literacy, numeracy, and patient engagement are key components of patient proficiencies necessary to support constructive communication between physician and patient.

Methods: Through the Ohio State University IRB-approved Lupus Registry, we recruited patients to complete health literacy, numeracy, and patient activation measures. 65 patients completed measures of health literacy (sTOFLA), subjective numeracy (SNS) measuring patient’s perception of their math ability, objective numeracy (ONS) that is patient’s actual math ability, and patient activation (PAM) measuring patient engagement. Cronbach’s alpha was used to assess reliability and internal consistency of measures; alpha above 0.7 are considered acceptable.

Results: All patients demonstrated adequate health literacy (scores above 23; Cronbach’s alpha= 0.77) compared to the 12% of population as estimated by the National Assessment of Adult Literacy. Patients’ ONS was low (mean score=3 out of 8 possible; Cronbach’s alpha= 0.92) and consistent with mean scores for high-school-only educated individuals. PAM scores averaged at 3.3 (out of 4 possible), suggesting patients want to be engaged in their disease. See Table 1 for correlations; values are likely due to small sample size.

Conclusion: Minimal literature exists to describe health literacy in SLE patients, and even less describes numeracy and engagement. It is clear that, despite adequate health literacy and patient activation, these patients still perform poorly on math-related questions. PAM and SNS have a positive correlation suggesting that patients who are more engaged also perceive their math ability to be better. SLEDAI scores while not statistically significant are negatively correlated with PAM scores, suggesting patients who are less engaged have higher disease activity scores. Relations with SLICC scores require more data collection, which is ongoing. These data suggest that patients with poor PAM scores have high disease activity scores; other trends are promising. These data point towards the potential to modify patient skill sets and improves outcomes in future research. Table 1:

SNS= Subjective Numeracy ONS= Objective numeracy

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/understanding-lupus-patients-ability-to-work-with-numbers/