The problem is large: more than 20% of all Australian children and young people attend hospital for their chronic health needs, with many more attending community and primary care services. Children with chronic illness often take medication every day, have frequent blood tests, and endure long hospital stays. Their illnesses often create massive financial cost and dislocation of family. These family stresses are magnified for rural, culturally and linguistically diverse and Indigenous Australian families.
K2A are working to reduce the ‘whole of life’ impact that chronic illness has on the child, their family, and the health economy. Similarly, we will protect the rights of every child to reach their full potential.
We have formed a National Alliance of clinicians, researchers, parents, and young people who aim to “normalise” the lives of children with chronic illness and allow them to have the same life trajectory as their healthy peers. Our aims are to accurately measure the whole-of-child-life impact of chronic illness, empower families with a child with chronic illness and evaluate interventions to minimise the impact of chronic illness. We will cost the changes needed to improve models of care for children with chronic illness, develop policies which reduce the impact of chronic illness in children and raise community awareness about childhood chronic illness at a national level.
Our aim is to improve the care, education and support of children with severe, early-onset epilepsies and their families. We are involved in several programs that will help us achieve this. Our genetic epilepsy group is creating a consented clinical/biological database of children with this condition.
We’re also exploring the experiences, information and support needs of families undergoing genetic testing. This includes an interactive family day to engage families in our clinical research, provide them with support and information, and assess their needs. We’ve created two pieces of literature that will make it easier for young people to understand and consent to care relating to their condition.
We recently produced a report on the prevalence of genetic conditions in children with chronic kidney disease. And we are now investigating the attitudes and information needs of parents whose children have a genetic kidney disease. We’re also reviewing literature on family-centred care for children with tuberous sclerosis and kidney disease. The information we gain from this will be used to inform models of delivery, service improvement and future research.
We’re collaborating with The Drug Discovery Centre at the Children’s Cancer Institute on a combination therapy project. Through it, we’re seeing which in vitro conditions most accurately mimic the effects of existing drug combination therapies. Then we’re using this information to create new combination therapies to treat benign and malignant tumour syndromes. Through this work, we’ll be able to predict which patients will be sensitive to these therapies in the clinic. Our focus is on children with cancer, tuberous sclerosis and neurofibromatosis.
Growing Healthy Kids
Addressing childhood obesity has become a priority for the NSW Premier. We’re developing new initiatives to address the issues of childhood obesity. These will be community based and relevant to the local population. We’re also supporting state-wide efforts with complementary strategies.
Our priority is to:
- Engage with parents of young people in their homes and communities
- Create healthier physical activity and food environments
- Reach multicultural, Indigenous Australians and vulnerable communities
- Provide weight management advice and services.
The Kids to Adults CAG brings together NSW’s leading clinicians and scientists in childhood chronic illness. We have established a bi-directional partnership with child health specialties. This will help us discover solutions to common problems across the spectrum of child healthcare. We will do this using an internationally recognised model of child cancer research, which includes basic, translational, clinical and behavioural science investigators.
Our team comes from 9 of our partner organisations and includes further partnerships with:
- Sydney Health Partners
- University of Melbourne
- The Children and Youth Research Network
- Royal Far West
- Children’s Hospital Westmead
- Campbelltown and Liverpool hospitals
We are using these partnerships to develop new funding applications, implement new policy and advocacy strategies, and ensure improvements to patient care and quality of life.