MyLupus, a new mobile phone app that’s meant to be used between doctor visits, was designed to help people with moderate to severe lupus make more-educated healthcare decisions.
The free application was developed by a team of scientists — including rheumatologists at the University of Alabama at Birmingham (UAB) — from 19 universities and four clinical sites as a decision-making tool for lupus patients.
“For many patients, lack of knowledge about lupus and their treatment options often interferes with their decision-making process,” Jasvinder Singh, MD, a professor of medicine in the UAB division of clinical immunology and rheumatology, said in a university press release.
“We wanted to take our computerized system and make it more accessible to lupus patients, which led us to create a free, phone-based app,” Singh said.
The smartphone tool aims to better educate patients about lupus, so as to assist them when they’re working with members of their healthcare team. In addition to information about lupus, the computerized decision-making aid offers insight into treatment options and advice on topics, such as how to live a healthy lifestyle with the autoimmune disorder. App information is broken down by age, sex, and race.
Goal of new mobile phone app is educating lupus patients
The patient-focused mobile phone app was developed out of a multicenter, observational study dubbed IDEAL (NCT03735238), sponsored by UAB. The $2.2 million Patient-Centered Outcomes Research Institute-funded study, which is still recruiting participants, involves testing three shared decision-making strategies in at least 500 adults with lupus.
The study, for which Singh received funding in 2018, found that patients who used a computerized decision aid, rather than a traditional pamphlet handout with treatment and decision information, experienced a significant drop in uncertainty regarding treatment options. Those participants also were more likely to choose options that best matched their values, and better understood the disease overall.
“Patient education and empowerment are critical for early treatment access,” Singh said.
“Lupus is not a one-size-fits-all disease, and studies have shown that minorities, specifically minority females, are more likely to have severe lupus and life-threatening complications,” Singh noted.
The app was ultimately created in collaboration with the study’s partners and lupus patients. The iterative process used cross-collaboration to incorporate patient feedback with lupus knowledge into a single platform.
We are confident that review of this app before and after the clinic visit will lead to meaningful dialogue between the patient and the provider. The app is a tool that every lupus patient can easily understand regardless of their education level or health literacy level.
Using the tool, patients can input their most recent lupus status, such as “quiet or in remission,” or “active, but not in my kidneys.” They also can indicate the treatment they’re using or whether they need more information about their options. The mobile phone app also contains information on other topics, such as how lupus can affect the kidneys and other internal organs.
Singh and his team hope the app will eventually be offered in other translations and used in healthcare systems and practices nationwide.
“Our hope for the future of this app is that every patient with lupus in the United States and in the world can use it to access this information and make the best treatment decisions for their lupus, as informed partners with their [providers], in a true sense of shared decision-making for their health,” Singh said.
App research was led by Singh and co-principal investigator Winn Chatham, MD, UAB professor emeritus.
“We are confident that review of this app before and after the clinic visit will lead to meaningful dialogue between the patient and the provider. The app is a tool that every lupus patient can easily understand regardless of their education level or health literacy level,” Singh said.
