Literacy in patients with a chronic disease: Systemic lupus erythematosus and the reading level of patient education materials

Objective. (1) To assess literacy in a sample of patients with systemic lupus erythematosus (SLE); (2) to evaluate the reading level of patient education materials specific to SLE; and (3) to compare patient literacy levels to the readability of materials written for patients with SLE. Methods. Rapid Estimate of Adult Literacy in Medicine, a reading recognition test, was given to 94 patients with SLE. Socioeconomic status was assessed using Nam-Powers. Patient education materials frequently used with these patients were assessed for readability grade level. Results. The patients with SLE were reading on an average 7th-8th grade level; their average educational level (last grade completed in school) was 11.9. The average socioeconomic status (SES) according to the Nam-Powers assessment was 43, indicating high school completed, no college, an income range of $5000- $10,000, and occupations such as household workers and laborers. Multiple linear regression revealed that race and education correlated with reading (p < 0.001), but age, sex, and SES did not. The readability of surveyed SLE patient education materials ranged from 7th-15th grade level. Eighty-nine percent were written at a 9th grade level or above and were therefore inappropriate for about half the patients surveyed. Conclusion. Reading skills below high school level existed for 48% of patients surveyed, yet only 11% of SLE patient education materials were written below a 9th grade level. Current SLE patient education materials are written on too high a level for many patients. Identifying patients with low literacy may help provide more appropriate patient education and better medical care.