Type 1 diabetes is exhausting and unrelenting. It can be life threatening and there is never a break from it.
It is affected by every mouthful of food and exercise — even sleeping, stress, fatigue, puberty and illness can affect blood glucose levels. The burden on patients and their families is enormous and extremely stressful.
The Children's Diabetes Centre is doing extensive research on how technology can be used to treat type 1 diabetes and reduce its burden.
Professor Tim Jones, co-director of the Children's Diabetes Centre and paediatric endocrinologist at Perth Children's Hospital, said the Hybrid Closed-Loop Outpatient Trial – for which he is chief investigator – involved participants testing an automated insulin delivery system to see if it was better at optimising blood glucose levels than standard insulin therapy.
"The system automatically controls blood glucose levels and delivers the required insulin and by doing so, keeps patients safer as it prevents their blood sugar levels from going too high or too low," Professor Jones said.
"It's a bit like the development of a self-driving car – without the system you have to check your own blood glucose levels, so it's something you have to spend every part of your day thinking about. The object of the hybrid closed loop is to take some of that thinking away."
Professor Jones said feedback from those involved in the trial had been positive.
"Families are reporting less stress and that it's a lot easier on them," he said. "The participants like the system and don't want to give it back so that's also telling.
"The preliminary reports are that blood glucose levels are being controlled much better and that people with diabetes are having to work less hard to control their diabetes.
"If patients get better control of their diabetes, cardiovascular, eye and kidney complications in later life will be reduced.
"One major outcome of this research will be a reduced rate of those complications so that children grow up to be healthy adults. Life expectancy will be extended if you reduce the complications — it's as simple as that."
Professor Jones hoped the system could be made available to patients as early as next year.
"We are feeling very positive that the hybrid closed loop system is making a difference," he said.
"We ultimately hope this will be another step forward to making the lives of people with type 1 diabetes a lot easier and produce better outcomes — better blood glucose levels, fewer complications and lift the burden of diabetes."
This research is funded by the Type 1 Diabetes Clinical Research Network, an innovative clinical research program led by JDRF Australia and funded by a Special Research Initiative through the Australian Research Council.
Watch our Hybrid Closed Loop Outpatient Trial video here.
Photo caption: Georgia Egan, a particpant in the Hybrid Closed Loop Outpatient Trial, with Professor Tim Jones
First published Thursday 26 July 2018.
Georgia's story
"I've definitely gotten used to having Type 1 Diabetes but there are periods where I give up a little bit. I won't grow out of diabetes. It's always there. There's no escape from it."
Georgia Egan was diagnosed with type 1 diabetes when she was nine. Despite having lived with the chronic disease for nearly half her life, the 17-year-old said she was finding it tough being a teenager with diabetes.
"Diabetes is always on the back of my mind — there's never a break from it," she said. "I feel as if I'm always testing my blood sugars, bolusing (dose of insulin taken to handle a rise in blood glucose) and counting carbs. I know it's not a hard thing to do but it gets really annoying having to remember to do it all the time.
"When I was first diagnosed it was easier, as mum would remind me to test myself, but now that I'm meant to have more control, I don't do it as much. There are days where I really don't want to deal with diabetes – but that's not really an option as this is the reality of my situation."
Mum Belinda agrees the teenage years have so far been the family's biggest challenge.
"When Georgia was younger it was easier to manage her diabetes because you're in charge of what she eats, where she goes out and testing," she said.
"Teenagers are far more independent so you need to hand over the reins a little bit. I feel I'm always on Georgia's case but if she forgets to change her pump site and then goes high (hyperglycaemia) or forgets to bolus or test, which can lead to highs or lows (hypoglycaemia), it's very frustrating."
Belinda says teenagers have enough to cope with without adding diabetes into the mix.
"Georgia's juggling Year 12, a social life and Type 1 Diabetes and unfortunately, life sometimes gets in the way of managing her condition and staying on track," she said.
"We're really focusing with her on making sure we're doing everything to help her, but she's got to meet us halfway and want to do it."
Being involved in research at the Children's Diabetes Centre has helped to ease some of the burden. Georgia recently completed the Hybrid Closed-Loop Outpatient Trial, an at-home trial of a device that is a step towards an artificial pancreas.
"This system definitely helped with my diabetes management, especially overnight, and helped to keep my blood sugars as stable as possible which was fantastic," Georgia said. "I didn't go low as much.
"These types of trials plant a seed of hope that researchers will develop something that will be a long-term solution or even help cure diabetes. I want to be part of the solution that can help make life easier for those living with diabetes."
Photo: Georgia with her mother Belinda.