New App is Helping Lupus Patients Fulfill Gaps in Treatment

It is not a secret that lupus can be one of the most annoying and challenging conditions someone could suffer from. Not only is it a disease that requires constant evaluation for a long period of time in order to be diagnosed, but it is also characterized by its flare, which can even require staying in bed for a long time in order to recover.

Lupus is also considered an unpredictable condition that requires maintaining good communication with affected people’s physicians in order to determine the best practices and suggestions for their care. However, it is also important to recall its impact in mental stability since lupus is one of those chronic diseases like fibromyalgia and anemia that may cause depression. It is widely known that being depressed makes someone secrete toxins that may lead to worsening the condition and extending the time it takes to recover from a flare.

Depression or drowsiness play an essential role in people forgetting to give proper care to their condition, constantly forgetting to take their medications, note down the effects of said medication as well as the symptoms they display and the upcoming appointments they have with their physicians. For these reasons people with lupus in most cases have an agenda in order to note down all the things they have to remember day to day.

LupusMinder: a practical way to keep all information at hand

Everyone knows by now how marvelous technology can be when given the right use, it can be quite useful for medical purposes as well.  In the view of this, there are healthcare sectors specialized in the development of digital tools to assist people suffering from chronic diseases carry on with their condition and its day to day symptoms.

Thanks to mobile technology, it is easier to have “personal assistants” that can go anywhere, reminding people to do important stuff they may have forgotten. Such is the case of LupusMinder, the new mobile app a launched by the Hospital for Special Surgery. This app was designed for people with lupus to serve as a tool to track medications, appointments and daily symptoms suffered.

The app call LupusMinder (a very direct and straight-to-the-point name) was co-developed by a specialized department at the Hospital for Special Surgery entirely dedicated to rheumatology, social work and digital communications. It was also supported by medical educators from the hospital’s special academy for rheumatology problems.

What triggered its development?

The capability to help people with lupus a reminder and medication tracker is undeniable, however it is important to review the reasons that triggered its development in the first place. The truth is that the hospital’s staff noticed that most patients suffering from lupus were unable to specify essential aspects from its care process such as the breadth of their symptoms, moods, appointments and medications as well as recommendations given by physicians.

By recognizing this problem, medical staff spotted the need for a resource that patients could use to organize their life with lupus. Likewise, Doctor Mary K. Crow, head of the Hospital for Special Surgery stated that people affected by this type of chronic conditions such as lupus may become overwhelmed by the aleatory changes in medications and different symptoms they feel each day.

LupusMinder rises as a definite solution and a comprehensive apps that helps patients affected by lupus record all information related to the condition helping them have a smoother management. One of the most remarkable and innovative features offered by this app is that taking information from the records it can create a chart displaying the progress over a short or a long period of time, helping people have an idea of people’s evolution throughout time.

Some of the most common symptoms displayed by people with lupus are fatigue, pain in the joints and rashes. However, an immense amount of symptoms related to lupus have been documented since lupus is a condition that changes a lot depending on the affected person. Although it is true that it affects dark-skin women mostly, it is also true that it can affect all types of people. Other common symptoms are: hair loss, swollen lymph glands and unexpected mood changes.

Making treatment and symptom tracking easier

The app is also an excellent source of information for physicians during patients’ appointments since it enables users to take pictures of their symptoms in their charts that can be saved as PDF files, a format that can be read it almost any device. This has proved to be an excellent way to keep track on lupus symptoms that fluctuate each day, not only the day the patient has an appointment with their doctor. It is also important to keep in mind lupus never sleeps, so this app is easily accessible for patients who need to monitor it 24/7.

Doctor Jane E. Salmon, a rheumatologist at the Hospital for Special Surgery says that the app serves as a valuable source of information when looking to develop an appropriate treatment plan, which is much easier when the patient presents a graph that allows the physician see the level of pain he or she has suffered throughout the days as well as pictures of recent rashes and swollen joints that have disappeared already.

Testing the app

Evaluations have already been conducted to determine the level of efficiency offered by the app. In several different patient groups the central theme was to have a concurrent and accurate record of lupus symptoms from the perspective of the affected person in order to contribute to give a more specific picture of the situation.

In order to develop an app that was able to cover the needs of people affected by lupus, one single easy question that helped to gather specific information about the condition was asked: “What do you need from a smartphone app to help you manage lupus?” The development process of the app and its features took into account all feedback and answers given to that question.

LupusMinder is currently available for Android and IOS devices, and it can be downloaded for free via Google Play and the Apple Store respectively. According to the estimations, at least 1.5 million people live with lupus only in the United States and the app looks to be an approach that satisfies the requirements of all people suffering from the condition, not only the ones treated at the Hospital for Special Surgery.

For more information, visit hss.edu/lupusminder.