SMILE, an Online Lupus Tool, Can Aid Shared Decision Making

Patients with systemic lupus erythematosus (SLE) often face many concerns, fears and uncertainties that render “treatment decision making very difficult,” says Jasvinder Singh, MD, MPH, professor of medicine and epidemiology at the University of Alabama at Birmingham. Often these patients, who tend to be women from minority groups, “do not have access to easily understandable patient care materials to help them with decision making,” he says.

Dr. Singh led a project, funded by the Patient-Centered Outcomes Research Institute (PCORI), at the University of Alabama to develop a medication decision tool for patients with lupus. The Shared Decision Making in Lupus Electronic (SMILE) decision aid provides culturally tailored, self-administered, computerized assistance for patients. Dr. Singh and colleagues designed the tool for people with limited literacy and limited health literacy, including racial and ethnic minorities. The researchers received direct guidance from Black, Hispanic and Asian people, who are disproportionately affected by lupus. A total of 52 individuals with lupus nephritis and 100 with lupus gave feedback on the initial content and design.^1-3

When tested in a U.S.-based, multi-center trial in 301 patients with lupus nephritis, the online decision aid surpassed a paper pamphlet on lupus from the ACR in decreasing patient conflict in the choice of immunosuppressive medications and improving informed treatment choice by patients. More patients rated the information in the online tool as excellent for understanding the impact of lupus, risk factors, medication options and evidence about medications than did so for the pamphlet. Patients also rated the ease of use of materials higher for the online tool than the pamphlet.

Dr. Singh

In 2021, Dr. Singh and colleagues implemented the online tool across 15 U.S. sites, aiming to reach at least 500 patients.^1,4

The free smartphone app and website for the lupus patient decision aid are available for use during in-clinic visits, at home and with telemedicine visits. More than 2,500 patients with lupus in 18 U.S. centers have now used the decision aid, according to Dr. Singh.

Decision Making for Patients

“There are a lot of decisions to be made when you have lupus. The key is making an informed decision,” says Susan M. Manzi, MD, MPH, medical director of the Lupus Foundation of America, Washington, D.C., and chair of the Allegheny Health Network Medicine Institute, Pittsburgh.

“Being informed means you have to understand the disease, the rationale for the intervention or treatment, and the benefits and risks of saying yes or no. This requires effective communication between the doctor and the patient,” Dr. Manzi says. “Any opportunity to allow a patient to choose from acceptable options fosters a sense of control and reduces the fear of being out of control.”