After realizing how many lupus patients had trouble keeping track of their medications, daily symptoms and appointments, an interdisciplinary team at the Hospital for Special Surgery (HSS) developed a mobile app called LupusMinder.
After collecting real-world patient reports, the rheumatology, social work, and digital communications department at HSS announced that the app is now ready and available for download, free of charge, worldwide.
With support from the HSS Academy of Rheumatology Medical Educators, the team took into consideration testimonials from patients who reported they couldn’t remember the breadth of their symptoms, when to take their medications, and that it was difficult to keep track of their moods and appointments between physician visits.
“As lupus symptoms can fluctuate each day, it can be challenging for us to assess overall disease activity if we only see what occurs at the moment the patient is in our office,” Jane E. Salmon, MD, an HSS rheumatologist, said in a press release. “When a patient presents a graph of his or her level of pain over a few days, or a photo of a recent rash or swollen joint, it helps me develop an appropriate treatment plan.”
One of the central goals of the app was to have a concurrent way to record lupus symptoms, including the patient’s guesses of the factors that might contribute to their symptoms as a whole.
With LupusMinder, patients can keep a log and review their history during their appointment, saving valuable time, helping communication, and optimizing treatment management.
Because patients can also take pictures of their physical symptoms, such as a swollen joint, as Salmon describes, doctors can also have improved access to accurate information. In addition, logs can be saved in a PDF file and sent to physicians, in case additional remote time is necessary.
“People affected by chronic conditions can become overwhelmed by changes in their medications or day to day variations in their symptoms,” said Dr. Mary K. Crow, MD, physician-in-chief at HSS. “We wanted to create a comprehensive app to record all pertinent information, lowering the stress associated with managing lupus. By inputting daily symptoms, the app also allows us to chart progress over a short- and long-term period.”
“We posed this question to our lupus patients: What do you want and need from a smartphone app to help manage your lupus?” added Roberta Horton, director of the Department of Social Work Programs at HSS.
“We took insights about what features would be most helpful into consideration as we developed LupusMinder,” she said. “The app is now available to the 1.5 million people living with lupus in the United States as well as worldwide — not just to those who are treated at HSS.”
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