New App Helps Patients Fill Key Gap in Lupus Treatment

New York, NY—October 12, 2017

Living with lupus is both challenging and unpredictable, making good communication between physicians and patients vital to managing care. Today, Hospital for Special Surgery (HSS), announced the launch of LupusMinder, a new mobile app designed to help anyone with lupus track medications, daily symptoms and appointments.

LupusMinder was co-developed by the rheumatology, social work and digital communications departments at HSS, with significant input from people living with lupus. Additionally, the app was supported in part by the HSS Academy of Rheumatology Medical Educators.

Staff noticed that patients could not remember the breadth of their symptoms, medications, moods, and appointments in-between physician visits. This recognition prompted the need for a patient resource to organize all the moving parts of living with lupus.

"People affected by chronic conditions can become overwhelmed by changes in their medications or day to day variations in their symptoms," said 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."

Lupus, or systemic lupus erythematosus (SLE), is a chronic autoimmune disorder in which the immune system attacks one’s own cells instead of protecting the body. Lupus affects women 9:1; and disproportionately affects women of color. While no two persons' lupus is the same, lupus can affect the skin, joints and kidneys. Symptoms may include: fatigue, hair loss, rashes, joint pain, swollen lymph glands, and mood changes.

The app enables a patient to easily access and review their history with their provider during valuable appointment time. Users can take pictures of their physical symptoms to show their physician at an upcoming appointment, as well as print and save their daily logs as PDF files.

"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," said HSS rheumatologist Jane E. Salmon, MD. "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."

Several patient focus groups were conducted to inform the development of the app. One of the central themes was the desire to have a concurrent way to record lupus symptoms, including the patient’s perspective on factors that may contribute to their symptom picture.

"We posed this question to our lupus patients: What do you want and need from a smartphone app to help manage your lupus?" said 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."

"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," she added.

LupusMinder is free and is available for both Android and IOS devices via Google Play and the Apple Store. For more information, visit hss.edu/lupusminder.