Lupus, a chronic, systemic, autoimmune disease, can affect many parts of the body. It affects people of all races and far more women are affected than men. Lupus nephritis (kidney disease) is seen to some degree in about 60% of lupus patients and can lead to kidney failure and the need for dialysis if not treated appropriately.
Until recently, there were no patient decision aids available to help those with lupus make medication decisions. With this in mind, researchers at the University of Alabama-Birmingham, working with the Arthritis Foundation and in collaboration with partner researchers from the Lupus Foundation of America, created an online, individualized, culturally-tailored decision aid for women with lupus kidney disease as part of a pilot study that included critical input from patients with lupus.
A total of 301 women with this disease were asked to compare the user-friendly online tool with a paper lupus pamphlet from the American College of Rheumatology. The results showed that the women who used the online decision aid reported feeling less conflict about their medication choices.
Arthritis Foundation Senior Vice President of Scientific Strategy Guy Eakin, PhD, and Laura Marrow, partnerships liaisons director, were members of the research team and were pleased with the results. “As exciting as this publication is, the next step is to communicate the results published here to reach more patients,” says Dr. Eakin.
The original study was funded through a Patient-Centered Outcomes Research Institute (PCORI) grant to help patients and health care providers make better informed health care choices. The results were published in the May 2019 issue of PLOS Medicine journal.
Due to the success of the study, PCORI has awarded the researchers additional follow-up funding to make the online tool available to thousands of patients across the U.S. in the next three years. “The follow-up study will be about learning how to best distribute this program, so that the greatest number of patients gain access to the tool,” Dr. Eakin explains.