Association of Health Literacy and Numeracy With Lupus Knowledge and the Creation of the Lupus Knowledge Assessment Test

Abstract

Objective Limited health literacy and numeracy are associated with worse patient-reported outcomes and higher disease activity in systemic lupus erythematosus (SLE), but which factors may mediate this association is unknown. We sought to determine the association of health literacy and numeracy with lupus knowledge. Methods Patients with SLE were recruited from an academic center clinic. Participants completed validated assessments of health literacy (Newest Vital Sign, NVS) and numeracy (Numeracy Understanding in Medicine Instrument Shortened Version, S-NUMi) and answered four questions to assess lupus knowledge (Lupus Knowledge Assessment Test, LKAT) determined through consensus expert opinion of wide applicability and importance related to self-management. Descriptive statistics and multivariable logistic regression modeling were used to analyze results. Results In our lupus cohort (n=125), 33% had limited health literacy and 76% had limited numeracy. The majority correctly identified that hydroxychloroquine prevented lupus flares (91%); however, only 23% of participants correctly answered a numeracy question assessing which urine protein to creatinine (UPC) ratio was greater than 1000 mg/g. The mean LKAT score was 2.7 out of 4.0. Limited health literacy, but not numeracy, was associated with lower knowledge about SLE as measured by the LKAT, even after adjusting for education. Conclusion Patients with SLE with limited health literacy had lower knowledge about SLE. The LKAT could be further refined and/or used as a screening tool to identify patients with knowledge gaps. Further work is needed to improve understanding of proteinuria and investigate whether literacy-sensitive education can improve care.

Knowledge, Attitudes, and Practices Among Patients with Systemic Lupus Erythematosus Toward Disease Management and Biologic Therapy

“…Several surveys investigating disease awareness among SLE patients indicate insufficient knowledge, limited access to disease-related information, and a notable lack of awareness regarding treatment medications. 5 , 6 …”

“…Several surveys investigating disease awareness among SLE patients indicate insufficient knowledge, limited access to disease-related information, and a notable lack of awareness regarding treatment medications. 5,6 Both the economic burden faced by SLE patients and their limited understanding of disease management have a substantial impact on their attitudes, practices, and willingness to opt for biologic therapy as a treatment, as well as their active involvement in disease management, consequently impacting the prognosis of SLE patients.…”

Evaluation of health literacy and its association with medication adherence and quality of life in childhood-onset systemic lupus erythematosus

“… 11 Limited research in cSLE demonstrates a high prevalence of inadequate health literacy 12 while studies in adult-onset lupus show that patients with low health literacy have poor lupus-specific knowledge, and higher health literacy has been shown to influence successful transition to adult care among patients with cSLE. 13 , 14 However, health literacy in youth with cSLE and its relation to medication adherence and quality of life is poorly understood.…”

Application of the Knowledge, Attitude, and Practice model combined with motivational interviewing for health education in female patients with systemic lupus erythematosus

“…[5][6][7][8] Lower health literacy was associated with worse patient-reported outcomes and higher disease activity in patients with SLE, especially in women. [9] Even after adjusting for disease activity and damage, Katz et al have reported that patients with lower health literacy had significantly poor patient-reported outcomes. [10] Knowledge and health literacy enable patients to monitor their symptoms and the disease impact.…”