Duke researchers hope that better monitoring leads to better treatment for multiple sclerosis patients.
They’ve developed a free iPhone app called MS Mosaic to help monitor the progression of the disease.
Doctors often have difficulty treating MS, an autoimmune disease that affects the central nervous system, because its symptoms vary from person to person.
“MS is difficult to manage because so many things can influence your day-to-day experience,” Duke neurologist Lee Hartsell said. “Genetics, stress, infections, even the outside temperature can have a direct effect on symptoms.”
The severity of symptoms including vision problems, numbness, muscle weakness and difficulty concentrating, vary from person to person. There is not a single lab test for MS or whether a patient is responding to treatment. That’s where mobile monitoring may help.
An example Hartsell used is fatigue.
“A patient may think a sudden bout of exhaustion is caused by their MS, when in fact it’s a side effect of a medication they’re taking or because they’re not getting good sleep,” Hartsell said.
It was these challenges that gave Hartsell and Duke assistant professor Katherine Heller the idea to collect daily and weekly information from patients with an app.
“We want to see how things are going even when you’re not in front of a doctor,” Heller said.
Patients complete a daily survey, noting any changes in their symptoms or missed medications since the previous day.
Once a week patients are guided through performance tests. These include a finger tapping test to gauge hand coordination and fatigue, a walking speed test and a timed addition test to assess memory and attention. Data also is collected using the iPhone’s built-in sensors, such as steps taken or hours slept per day.
The app then creates a report that lists any new symptoms or old symptoms that got worse.
“It’s hard to summarize several months of your life during a 20-minute clinic visit,” Hartsell said. “Many patients aren’t sure what to tell the doctor and what’s OK leave out. The report is meant to be a springboard.”
Researchers say the data will allow physicians to better tailor the treatment of the disease for each patient.
“If we could accurately differentiate between the different kinds of relapses, we could significantly reduce patient exposure to unnecessary steroids,” Hartsell said. “We hope to finally get somewhere in customizing treatment for individual patients based on their data. This app helps the patient, the clinician and the researcher, all at the same time.”