Loyola faculty join forces to create health management app

When Susan Baratta was diagnosed with chronic kidney disease (CKD) 21 years ago, it wasn’t the only condition she was managing. “Between my kidney disease, my blood pressure, and my diabetes, it’s a complex situation,” she says. Diabetes and high blood pressure are the most common causes of kidney disease, which often makes it difficult to diagnose. In fact, as many as nine in 10 U.S. adults with CKD don’t know they have it, according to 2021 data from the Centers for Disease Control and Prevention.

Baratta has advanced CKD, which means her kidneys can’t filter waste and excess fluid from her blood efficiently. So, three times a week, she gets dialysis, a procedure that can take anywhere from three to five hours and cause drops in blood pressure, nausea, or fatigue. “You get used to being poked, but the whole thing is exhausting. You have to come in with a good attitude,” she says. Not to mention the physical toll, CKD is a condition commonly associated with high total and out-of-pocket health care costs.

With the help of nephrologist Dr. Holly Mattix-Kramer, professor at the Parkinson School of Health Sciences and Public Health and Stritch School of Medicine, Barrata has been able to manage and slow the overall progression of her disease through lifestyle changes like maintaining a healthy diet, getting regular exercise, and lowering her blood pressure. But while Barrata is actively engaged in the management of her disease, that’s not always the case according to Mattix-Kramer, who finds most “patients need more help with disease self-management due in large part to the complexity of CKD and its related conditions.”

But what if, Mattix-Kramer thought, patients could use a tool they’re already familiar with—their mobile phone—to self-manage their CKD? How could that improve quality of life and health outcomes for patients like Barrata?

Self-management mobile apps offer a potential solution to help individuals like Barrata manage complex health problems, but of the many health apps on the market, most only address one disease or one aspect of a disease at a time. “I track my weight and I track my blood pressure, but right now it’s all in separate apps,” explains Baratta. More than just inconvenience, by having to find and use different apps, it’s more difficult for patients like Baratta to understand how their data correlates.

Seeing an opportunity to address this need, Mattix-Kramer and associate professor Talar Markossian assembled a team of Loyola researchers and Information Technology (IT) experts to study and develop a new app for patients with nondialysis-dependent CKD.

“Our goal is to create an app that takes a whole care approach; an app that focuses on a patient’s entire well-being, not just tracking medical data,” says Mattix-Kramer. “With this tool, it’s our hope that patients will more easily be able to manage their condition and have a higher quality of life.”

As part of the development process, the team assembled various focus groups of stakeholders, including pharmacists, nephrologists, nurses, and patients, including Baratta and John Ortiz, an adjunct professor at Loyola who was diagnosed with polycystic kidney disease in 2005.

“We wanted to make sure we included the voices of patients with CKD during the development process,” says Markossian. “With so many apps, there are concerns about privacy issues and patient information. By developing a self-management app in partnership with the health system and its stakeholders, we can ensure it is safe and serves the needs of both the provider and patient.”

And incorporating that “patient perspective” has already played an important role in shaping the functionality of the app. During a recent visit to Loyola’s Health Sciences Campus, Baratta and Ortiz had the opportunity to see the app in person for the first time since providing their initial input.

They watched excitedly as Jason Boyda, a clinical research programmer at Loyola, scanned through the app, with new questions bubbling up as different components appeared on screen. “Can the app convert pounds to kilograms?” asked Ortiz. It can’t right now, but the study team is looking into it after Ortiz and Baratta explained that the dialysis center uses kilograms to track patients’ weight before and after treatment.

“This is going to be so helpful for us,” says Ortiz. “If I had something like this earlier, it could have helped me even more. And for patients who are in Stage 2 or 3 kidney failure, maybe this can help them stay off dialysis longer.”

In addition to its ability to track the many variables associated with CKD, the app also houses an educational guide to help patients and their family. “Even though I have a background in health care, it was still overwhelming to try and understand all these new terms and process,” says Ortiz.

“You may be literate but that doesn’t mean you are health literate. This app helps you to understand what’s going on with your diagnosis.”

Providing this kind of prevention and education is where Markossian believes the field needs to move. “If we’re successful, not only can we cut health care costs for both patients and health systems, we can give patients the control to effectively manage their own health.”

For Baratta, that means more time to spend with her children and grandchildren.

“Nobody wants to have kidney disease, but it’s not like you have six months to live,” says Baratta. “You can have CKD and have a viable life if you choose to and have the right attitude. This new app helps you do that.”

Read more stories from the Parkinson School of Health Sciences and Public Health.