Digital tech for patients with lupus: Not ready for prime time?



As a tech-friendly millennial with lupus, New York City television producer Adrienne Nicole seems likely to embrace the power of digital technology to help monitor her condition. In fact, she doesn’t use any lupus apps or interactive websites.

She’s concerned about privacy – “putting in information about the specifics of my health and daily habits makes me uneasy.” And she wants something that’s lacking in lupus apps: a connection to live health professionals.

“If I have a quick question or a strange symptom, it would be great to see a familiar face or speak with someone who can look up my medical history and make an informed suggestion,” said Ms. Nicole, who is 38.

For now, Ms. Nicole is out of luck. In fact, digital technology overall is failing patients with lupus, researchers say. Educational websites are often overwhelmingly impenetrable, and poor-quality lupus apps fail to engage users or allow direct communication with health care providers.

Going forward, “multidisciplinary collaborations between patients, clinicians, clinical researchers, and app developers are essential to create user-centered apps that empower the lupus community and advance care,” said rheumatologist Shanthini Kasturi, MD, of Tufts Medical Center, Boston. She is coauthor of a 2020 systematic review of lupus apps published by the journal Lupus.

Existing lupus apps: ‘Major improvements are needed’

For the review, Dr. Kasturi and colleagues examined 20 lupus apps: 10 educational, 7 designed for patients to track symptoms and 5 with interactive online communities. Some fit into more than one of these categories.

Only two, My Lupus Log by the drug company GlaxoSmithKline and ArthritisPower by the Global Healthy Living Foundation, reported more than 5,000 downloads (10,000+ and 5,000+, respectively). Both are free.

Dr. Shanthini Kasturi
Overall, the reviewed apps didn’t do very well on an app quality scale. The mean score was 2.3 (standard deviation, 0.6) out of 5: “Most apps scored poorly based on design, user interface, functionality, and credibility.”

None of the top three highest-scoring apps “utilized validated outcome measures.” And “none offered features for patients to create and track goals, directly connect with a physician or expert in the field, or synchronize data with electronic health records. None of the apps provided patients with feedback by analyzing data that was collected.”

In an interview, Dr. Kasturi speculated that app developers failed to get “significant or ongoing input from patients with lupus. Direct and iterative feedback from end users is critical to creating a functional product that offers a good user experience. In addition, several of the functionalities that patients’ desire (e.g., synchronization with electronic health records) may require the coordination and collaboration of multiple platforms and stakeholders, which can be challenging.”


What do patients with lupus want from digital tech?

There’s sparse research into what patients with lupus want from digital tech. For a 2015 study presented at the American College of Rheumatology’s annual meeting, researchers at the Hospital for Special Surgery in New York convened focus groups of 57 patients with lupus (84% female) and found that an app could help in six areas: “track symptoms, manage medications, manage appointments, communicate with providers, [provide] nutrition and exercise tips, and manage emotional/psychological issues.”

The Hospital for Special Surgery developed an app called LupusMinder. The 2020 systematic review in Lupus gave it its highest app quality rating – a mean 3.2 out of 5.

The Lupus Foundation of America reports similar findings. Literature searches and a landscape analysis revealed that patients with lupus seek to communicate with their doctors and manage symptoms, stress/distress and medications, said spokeswoman Mary Crimmings. “Mobile apps did not perform as well as group programs and websites in meeting needs around all four of the self-management behaviors. The apps were designed to provide basic information and to help patients with tracking and reminding. They did not address behavior change.”

She added that “racial disparities exist in both lupus prevalence and prognosis. In developing an online lupus management program, it is essential to meet the unique needs of and best practices for intervening on African American and other minority populations.”

For a 2020 study in Arthritis Care & Research, researchers at Washington University, St. Louis, and Saint Louis University interviewed 56 patients with lupus, all female, about their Internet use. Nearly all (n = 55) reported having Internet access, and 80% said they go online for lupus information. Only 14% said they always trust online information about lupus, with 82% saying they sometimes or usually trust it.

The subjects told researchers they want information to help them manage their flares. Most said they want websites to be updated more often to reflect new findings. Some wanted to be able to interact online with other people with lupus, although others said “they do not trust information online without the presence of physicians or health care experts.”

Brianna Fitzpatrick, a 26-year-old Long Island nonprofit consultant who has lupus, agreed about the importance of connecting with health professionals. “I would appreciate a hybrid model of telehealth and in- person appointments, where a doctor and patient can decide to see each other every X weeks or months, but also agree to check in with each other via video chat in the meantime,” said Ms. Fitzpatrick, who is president of the Lupus Research Alliance Young Leaders Board.



Vision for future tech: Comprehensive and accessible

What’s next for digital tech and lupus? Rheumatologist Alfred H.J. Kim, MD, PhD, director of the Washington University Lupus Clinic, coauthored the Arthritis Care & Research study. In an interview, he noted that many of the patients interviewed in his study were minorities and lived in poorer neighborhoods. Internet access levels weren’t as high in this population as among Whites, but they were still significant. “The majority not only had access to the Internet, but they were also looking up information about lupus. It’s going to be more important to continue to leverage this platform.”


Dr. Alfred H.J. Kim
Also, he said, “we need to simplify the process of providing information to lupus patients.” Education about lupus should be easily accessible, not hidden in a 20-page PDF. “There’s often too much material, or it’s given all at once, not in bite-size pieces.”

New digital tech projects are in the wings

Digital projects for patients with lupus are in the works. In Canada, researchers have spent 9 years developing a website “navigator” called MyLupusGuide with the help of patient advisers. A 2019 report published in Lupus Science & Medicine found that 3 months of use of the tool “improved activation in patients with a low activation at baseline and in men. Self-efficacy also improved significantly without changes in coping strategies.”

More studies about the tool’s effectiveness are on the way, Paul R. Fortin, MD, MPH, a rheumatologist at Laval University, Quebec City, said in an interview. However, there’s no financial support for the tool. As a result, “we are presently not able to update the content of our navigator and have been limited in its impact. It is unfortunate since we see a future for this tool that aims at supporting self-management for our patients with lupus through valid and useful pragmatic information.”


Meanwhile, the Lupus Foundation of America is developing an online lupus education tool, said rheumatologist Daniel J. Wallace, MD, of the University of California, Los Angeles. The tool should be available within 18-24 months, Dr. Wallace said in an interview.

The statistically validated tool will highlight “strategies to embrace living with lupus fearlessly,” Dr. Wallace said. “There’s a lot of misinformation on the web, and we just really need something that is scientifically strong.”

None of the sources for this article reported having any relevant disclosures.

Dr. Daniel J. Wallace