New app aims to help those with mild hemophilia

John Rogasky holds a phone displaying the HIRT? app co-developed by Kathy Mulder.
John Rogasky holds a phone displaying the HIRT? app co-developed by Kathy Mulder.
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Hemophilia and the HIRT? app

Winnipeg Health Region
Wave, May / June 2015

John Rogasky was installing flooring at his son's house when his knees started to feel hot and painful.

Given that he has congenital afibrinogenemia - a rare bleeding disorder - Rogasky wondered if the discomfort was a sign he was bleeding internally around his knees.

In these situations, people like Rogasky are immediately faced with two pressing questions. First, they must determine whether they are, in fact, bleeding. Second, they must figure out whether their injury is serious enough to warrant a visit to the hospital for treatment.

That can be a challenge for anyone who does not have a medical background.

But now, people who have mild forms of hemophilia have help, thanks to an app developed by a team led by Kathy Mulder, a physiotherapist with the Manitoba Bleeding Disorders program, and JoAnn Nilson, a physiotherapist who works for a similar program in Saskatoon.

The HIRT? app (the name stands for Hemophilia Injury Recognition Tool) is the first of its kind in the world.

Hemophilia is a genetic disorder affecting mainly men, in which blood does not clot properly, resulting in internal bleeding. People with milder forms of the disease do not experience frequent bleeding problems, and may not recognize symptoms of a more severe injury.

The app provides users with information that can help them identify whether they have an injury that needs medical attention. It explains first aid management, and also provides users with reminders to check the status of their injury at intervals.

Rogasky's condition is due to the fact that his body does not produce a particular type of protein that causes blood to coagulate.

In his case, he was able to tap into HIRT? via his smartphone to check the symptoms of his injury and decide whether he needed medical treatment. After checking the app, he decided against going to the hospital for treatment. HIRT? also sent reminders to his phone within an hour of using the app, and again 24 and 48 hours later, so he could re-evaluate his knees.

Rogasky says the app is a huge help because it assists him to sort out potentially dangerous injuries from those that aren't. "It's not the surface nicks and cuts that bother me. I can see whether there's blood on my skin surface," says Rogasky. "It's the places I can't see, the ones I might forget to check. If you can't see the blood, it's out of mind. I love this app. I don't get injured that often, so I forget what I'm supposed to do in between injuries."

The tool also saves him time. "Treatment can take three days, during which they give me blood products containing fibrinogen," he says, explaining the first day at the hospital is followed by two days of checkups.

Out of approximately 3,500 men with mild hemophilia in Canada, 1,700 to 1,800 fall into the target area for the HIRT? app, which is aimed at men between 18 and 35 years of age. This is a time of life when young men may ignore an injury for weeks, only to make it worse by the time they seek treatment, says Mulder, adding anyone is welcome to download the app for free.

The idea for the app arose after Mulder and Nilson compared notes. Both were treating young men with mild hemophilia, who were active in sports, and who often preferred a "wait and watch" approach when dealing with potential injuries. They also favoured seeking advice from relatives or friends rather than going to a hospital.

From 2004 to 2011, Mulder and Nilson worked out on paper the information needed to help their patients tell the difference between major and minor injuries. Then they discovered the fact that young men did not want to read another booklet. "They wanted an app so they would have the tools they needed at their fingertips," says Mulder. "They wanted help in recognizing the symptoms of a more severe injury."

Richard Lomotey, a post-doctoral student in computer science at the University of Saskatchewan, produced the app, which was released last December.

Although the app was originally designed for young men with mild hemophilia, it has also caught on with people like Rogasky who have other types of bleeding disorders.
Development of the app became possible when the team won Caregiver Awards from the Bayer Hemophilia Awards Program in 2011 and 2014. Additional funding from the CHS/Baxter Canada Inherited Bleeding Disorders Fellowship Program for Nurses and Allied Health Care Professionals is supporting the evaluation of the app's effectiveness.

Other organizations involved in the production include the George and Fay Yee Centre for Healthcare Innovation, the Saskatoon Health Region and MITACS, a not-for-profit national organization that supports social innovation and research. The app has since won a Connected to the Community award in 2015 from the Canadian Wireless Telecommunications Association.

Susie Strachan is a communications advisor with the Winnipeg Health Region.

Wave: March / April 2015

About Wave

Wave is published six times a year by the Winnipeg Health Region in cooperation with the Winnipeg Free Press. It is available at newsstands, hospitals and clinics throughout Winnipeg, as well as McNally Robinson Books.

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