A survey of patients in the Duke Lupus Registry has been launched to evaluate health literacy among patients of the Duke Lupus Clinic to identify outcomes that may be affected by low health literacy and to develop interventions to improve disease management among patients with systemic lupus erythematosus (SLE).
Launched in 2019, the research began with both validated objective and self-reported health literacy assessment surveys. The next steps will determine the clinical associations with low health literacy and prepare interventions that may help improve outcomes in this population.
Measures used to assess health literacy included medical word fluency, nutrition label interpretation, simple math skills, and ability to understand blood sugar ranges among others.
“Our goal is to determine baseline health literacy of our Duke Lupus Clinic and determine the associations of low health literacy with clinical lupus outcomes,” says Mithu Maheswaranathan, MD, a third-year rheumatology fellow working under the leadership of Megan E. B. Clowse, MD and Jennifer L. Rogers, MD, who see patients in the Duke Lupus Clinic. The Division of Rheumatology and Immunology has taken a lead role in classifying disease types of lupus.
“We know that patients with limited health literacy and numeracy struggle to manage their lupus,” Clowse says. “This research will help us to identify new ways to better care for this important and often underserved group of patients.”
Health literacy associated with chronic disease, poor outcomes
Maheswaranathan says low health literacy is associated in other chronic diseases with poor clinical outcomes, including higher rates of medication non-adherence, increased hospital visits and readmissions, more emergency service utilization, and higher mortality. Conservative estimates suggest that the cost of low health literacy is greater than $100 billion in health care costs each year in the United States.
“Unfortunately, very little research has been done on the implications of low health literacy on patients with lupus,” Maheswaranathan adds.
Maheswaranathan and his research team will analyze the association of health literacy with demographics and initial health outcomes for patients with SLE. Future plans include developing new disease self-management techniques to help these patients.
“We are now exploring the clinical outcomes in patients who have low health literacy or numeracy,” Clowse says. “We will then work to find way to reduce the barriers that affect these patients.” The team believes the health literacy assessment and resulting interventions will improve the lives for all lupus patients by helping them navigate the complications of living with lupus more effectively.