Doing it for the kids

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Chemo1Andy Kollmorgen uncovers clever—yet simple—technology designed to support parents of children with cancer

Oral health is probably not high on the worry list for most kids undergoing chemotherapy but unfortunately, it should be. As many as four out of 10 of these children will develop an unpleasant oral condition as result of the treatments. It can get so bad, the chemo sessions may have to be put on hold.

The challenge is how to prevent and keep track of the disease in question, oral mucositis, which can set in seven to 10 days after a treatment and bring unpleasant symptoms, including oral inflammation, ulceration and bleeding.

The current approach can be disjointed: healthcare teams generally depend on outpatients to self-report, and inpatients are monitored by whichever member of the team sees the patient from day to day. Paper records change hands, clumsily, as the disease progresses.

With so many links in the chain of custody, communication between the patient, the family and the medical team is unavoidably messy. More often than not, there’s a lag time between reporting a problem and treating it. Spotting the disease and getting it under control can depend on how well the information is shared and understood.

On top of that, manual record-keeping asks a lot of patients and parents who are already in a bad place. Another administrative task is the last thing they need.

Enter Associate Professor Sam Gue, who is in charge of the Paediatric Dental Department at the Women’s and Children’s Hospital in North Adelaide. He and his eight-person research team have tackled this longstanding information management problem head-on, and they’ve taken a notably 21st century approach.

Armed with a $US10,000 Community Service Grant from the Wrigley Company Foundation and the Australian Dental Association Foundation, A/Prof Gue and his dedicated team have come up with what they hope will be a real game-changer—a specially designed app that monitors the onset and advance of mucositis in real time and keeps everyone in the loop.

Through the 2014 Wrigley and ADAF grants program, a total of US$82000 will be awarded to 13 programs across Australia. Since its introduction, in collaboration with ADA Inc. in 2011, the program has already awarded US$259000 in funds to grant recipients.

One team member in particular, Dr Gabrielle Allen, a paediatric dentistry registrar at the Women’s and Children’s Hospital who’s pursuing a doctorate at the University of Adelaide, brought some tech savvy to the table. She and A/Prof Gue put seven years’ worth of mucositis research into the app’s development.

Associate Professor Sam Gue and his team have come up with what they hope will be a game-changer—a specially designed app that monitors mucositis.
Associate Professor Sam Gue and his team have come up with what they hope will be a game-changer—a specially designed app that monitors mucositis.

Both have seen the ravages of the disease up close, and A/Prof Gue, who is also head of paediatric dentistry at the University of Adelaide’s Dental School and a private practitioner, is familiar with the pitfalls of cumbersome record-keeping and the far-reaching consequences. Oral mucositis currently affects between 30 and 40 per cent of chemotherapy patients at the Women’s and Children’s Hospital, and as many as 75 per cent worldwide.

“A paper-based system relies heavily on compliance, and it’s really doubling up on work,” A/Prof Gue says. “The idea with the app is that we avoid the paper trail and tie together the members of the medical team, from nursing staff to paediatric registrars. It also provides a standardised protocol of what to do and who to contact when symptoms appear. The app provides a readily available checklist of what to look for.”

Having one set of easily shared information is better for patients, better for parents and better for everybody on the medical team—A/Prof Gue is convinced. “Kids facing cancer treatment, along with their parents, are already overwhelmed with so much information,” he says.

But the success of an app depends on its user-friendliness, which is why the symptom reporting system had to be clear and simple. To that end, A/Prof Gue and Dr Allen adapted the smiley-face ChIMES scale, which measures the severity of oral mucositis on a scale on one to six. Even a pre-digital-age parent can understand it: one is a full smile, six a full frown, with various stages of discomfort in between.

For patients, the severity of mucositis can be measured by how hard it is to eat, drink or talk—everyday functions that become less doable as the disease moves up the scale. And it can move up with alarming speed. “We’ve had a couple of children who ended up in the ICU in just the last couple of weeks,” A/Prof Gue says.

To make sure patients stay on the smiley side of the scale, the app does more than just measure the progress of mucositis. It also provides daily oral hygiene instructions aimed at preventing it.

For A/Prof Gue and his team, using modern technology is simply about making patient care more personal and giving parents the right tools to monitor their child’s oral health, especially during the difficult days following a chemo session. If a patient experiences oral pain, the app alerts the Women’s and Children’s Hospital dental department, and specialist dental registrars contact the family and offer advice. No paperwork necessary.

It’s a new opportunity to put the brakes on oral health complications before they add to the other unpleasant side effects of fighting cancer.

The app, which will initially be offered to about 70 oncology patients at the Women’s and Children’s Hospital by the end of the year, will also serve an important research purpose.

As the data-gathering centrepiece in a longitudinal study, it will help build a long-term picture of chemotherapy-related oral health and complications, something which has not previously been done.

The goal is three-fold: to track the incidence of oral mucositis and measure its impact on patients; assess the effectiveness of treatment; and develop a body of evidence about the causes and triggers of the disease, including any genetic factors.

It’s a big step forward, but the journey has just begun, says A/Prof Gue, whose aim is to further his research team’s reputation as a world leader in oral mucositis research. “We’ll probably be looking at oral mucositis for the next 25 years,” he says.

Meanwhile, A/Prof Gue and his team could use all the support they can get. “It would be great to get more funding so we can make sure we have enough iPads and smartphones.”

Results from the app project will be presented at the Multinational Association of Supportive Care in Cancer event which will be held in Adelaide in 2016.

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