Diminished learning capacity. Mental health issues. Psychosocial problems. These are just some of the effects that cancer treatments can have on kids as they grow into adults.
It’s not just kids with cancer that suffer. As Glenn Marshall of the Sydney Children’s Hospital, Randwick discovered, “This is a much bigger problem and there are many shared problems amongst many chronic illnesses of childhood.”
Glenn, who is a Paediatric Oncologist and Clinical-Scientist, was research-deep in understanding the lasting impact of cancer treatments on kids when he joined Maridulu Budyari Gumal.
It wasn’t until he started talking to colleagues involved in the treatment of other childhood chronic illnesses at the partnership, that he noticed a correlation. That kids with cystic fibrosis, diabetes, epilepsy, neurological problems, asthma, immunity problems or disabilities, had the same problems as those he was seeing in his cancer patients.
When comparing healthy kids to those with chronic illness, there is an obvious gap in life trajectory.
Kids with chronic illness struggle with academic or vocational attainment. They are more prone to mental health issues and their relationships with people are affected. This gap gets larger the older the kids get.
“It deeply struck me that maybe we were creating people whose child-life had been so disrupted by their chronic illness that they moved into adulthood always behind their healthy counterparts. We can do better by these people.” Glenn reveals.
It was then that Professor Marshall and his colleagues formed the Kids to Adults Clinical Academic Group (CAG) at Maridulu Budyari Gumal, to address these problems locally within Sydney.
Now in its 3rd year, this CAG has created a National K2A Alliance to ensure that all children with chronic illness have a chance at a better adulthood.
A national K2A alliance
Following the work the CAG did locally, Glenn called on Child Health Research leaders across the country to form the Kids to Adults; Chronic Illness Alliance (K2A Alliance).
There are over 1 million kids with chronic illness in Australia today. This includes kids with asthma, diabetes, cystic fibrosis and cancer, among many other illnesses.
The K2A Alliance is looking to change the life trajectory of these kids.
They are bringing children, parents, schools, hospitals, researchers, clinicians, and primary care centres together to build progressive models of care. Care that will give kids with chronic illness the necessary foundations from which to transition into healthier adults, capable of living their best life.
A national consumer-led research program
So much of healthcare and health research is created on behalf of children and delivered to them. It’s not common for children to influence the outcome of research or have a say in what care they receive.
The K2A Alliance has launched a national consumer-led research program to turn this around.
- Talking to kids
What’s unique about the program is how much it’s driven by consumer engagement. Not just by the parents of the children, but by the children or young adults themselves. In fact, the K2A Alliance will be going into schools to talk to kids – those with chronic illness and those without. They’ll be asking a cross-section of children what kind of research they think the Alliance should be doing.
It’s important to talk to the healthy, the chronically ill and the parents to see what themes or differences emerge in their responses. This is an approach the K2A Alliance will be using across the country.
“Talking to the children is not something that's done anywhere in the world. A lot of what we’re doing is internationally unique,” reflects Professor Marshall.
- Working with schools
One of the biggest issues that children with chronic illness face is an interrupted education. These kids spend a large proportion of their lives in hospital or sick at home, meaning they miss a lot more school days than their peers.
While hospitals have school programs, sick kids only get 30 minutes of teaching by the bedside a day. This is minimal in comparison to the 5 hours they’d get at school. As Glenn says, “There’s something wrong here. I think people are falling through the cracks.”
It’s for this reason that the K2A Alliance is engaging with schools. They want to make sure children in hospital don’t miss out on important schooling.
Schools communicating with hospitals
At the moment, doctors and nurses don’t talk to teachers and vice versa. This is not from lack of trying. It’s more to do with a lack of having formal communication systems in place.
The downside is that the kids suffer. They often miss a year of school and are held back while their friends go on to the next year. This results in kids acting out and developing psychological issues that can turn into lifelong, emotional scars.
Professor Marshall is determined to fix this. As he says, “We particularly want to focus on this problem because we think it’s correctable.”
Education robots
One solution the K2A Alliance is looking at is the introduction of robots. They intend to make virtual education possible by placing robots into classrooms. Sick kids can then pair with these education robots from their hospital beds and virtually attend every lesson.
This could change everything.
It means that kids with chronic illness won’t miss out on important schooling while in hospital. If they don’t miss school, there’s a stronger chance they’ll develop into young adults who have access to the same opportunities their peers do.
Addressing rural inequity
Another area the Alliance is focused on is children in rural areas. Glenn explains that these children are able to access the same care as every other child. The care outcomes are the same whether a child lives in the city or the country.
It’s the whole of life outcomes that are affected for kids living in remote areas.
The out-of-pocket expenses for these families are far higher, because families have to take time off work to look after the other kids, pets and house. The cost of travelling to the city to receive care is higher too.
As Glenn points out, “This doesn’t seem fair. We’re a wealthy country and we should be able to address these things. It’s inequity.”
The Alliance is looking to digital platforms and tools to connect families with primary care doctors. A digital care solution will reduce the amount of travel these families need to take, greatly improving the lives of children with chronic illness in rural Australia.
Changing the system
We know we need to do better to improve the transition of kids with chronic illness into adults with long-term illness.
It’s not enough to just look at improving clinical services. Improving resources, education and the issue of missed schooling should also be a consideration. It’s about looking at and changing the whole system: national, social, legislative and bureaucratic.
As Glenn mentions, “There are children sitting in hospital beds in a model of care that’s pretty ancient; that’s requiring them to be away from their learning space.”
The Alliance is looking to bring the relevant, state authorities together to tackle these issues at a systems level. “For the first time ever, we can come together about the issue of missed schooling and chronic illness in children,” says Professor Marshall.
His enthusiasm for the work the Alliance is doing is contagious. “I’m very, very excited about the prospect of making this huge, decisive change for what is a kind of lost group of people.”
