A new research project has been created to better understand and address the health care and service needs of adolescents and young adults with cerebral palsy.
The $2.5 million project led by the Murdoch Children’s Research Institute (MCRI) will bring together leading researchers and clinicians in the field to improve the health and well-being of those aged 10-30 years with cerebral palsy and their families.
The Centre for Research Excellence (CRE), called CP Achieve, has been funded for five years by the National Health and Medical Research Council (NHMRC). December 3 also marks International Day of People with Disability.
MCRI Professor Dinah Reddihough, who will lead CP Achieve, said there was currently very little research into understanding and addressing the health care and service needs of young people with cerebral palsy.
“Our vision is to ensure that adolescents and young adults receive the best health care throughout this critical period of development, to enable them to contribute to, and participate in, all aspects of life,” she said.
“We want to get a better understanding of how common physical and mental health problems are, learn how those health problems impact participation in the community, understand the long-term outcomes of some childhood treatments like surgery, how to deliver therapy that supports participation in healthy lifestyles and recreation and how to promote good quality transition from childhood to adult health care.”
Professor Reddihough said that her team wanted to establish population-based data about the scope of health and participation problems, create best practices and guidelines for health and disability service providers, ways to empower adolescents and young adults to use health and community services and deliver cost-effective models to inform policy and practice and drive value-enhanced care.
Cerebral palsy is the most common physical disability in childhood. In Australia, there are about 700 new cases each year and 34,000 people have cerebral palsy.
Cerebral palsy has a higher disability burden (in terms of years of healthy life lost) than being blind or deaf or having severe asthma, diabetes or heart failure.
Professor Reddihough said despite the frequency and severity of this condition, there remained major gaps in assessment and management.
“Young people do not always receive uniform assessments, and care is fragmented with young people in some parts of Australia receiving much poorer services than those in other areas,” she said.
“This has a major impact on families leading to inadequate information provision, lack of support and little attention paid to carer mental health."
Lachie, who has cerebral palsy, said he was excited to see how the project would progress as it would make a huge difference to ensuring those with cerebral palsy received the best health care throughout their lives and not just in childhood.
The 16-year-old is currently making the transition to adult care.
“I know many of the researchers at MCRI who are working towards finding treatments for cerebral palsy but it’s also great to hear this project will create new guidelines and practices,” Lachie said.
“Transitioning to adult care has been a smooth process so far with a lot of support but I know others won’t necessarily have that same experience. I’m glad to know other kids my age will get the support they need because of this project.”
Lachie’s mum Julie Sayer said the project would also raise more awareness around cerebral palsy, which was a lot more common than people realised.
Professor Reddihough said they were committed to involving people with cerebral palsy, their families, clinicians, and service-providers so they could contribute to and influence this research.
To read more about Lachie’s story visit the MCRI blog page.
Researchers from the Australian Catholic University, Deakin University, La Trobe University, The Royal Children’s Hospital, Monash University, the University of Melbourne’s Melbourne Disability Institute, Western Sydney University, McMaster University in Canada, Jonkoping University in Sweden, The University of Queensland and the Cerebral Palsy Alliance will also contribute to the project.
*The content of this communication is the sole responsibility of MCRI and does not reflect the views of the NHMRC. CRE grant number 1171758.
Available for interview:
Professor Dinah Reddihough
Lachie and Julie Sayer
MCRI Communications Specialist
+613 9936 6211 / 0403 664 416
The Murdoch Children's Research Institute (MCRI) is the largest child health research institute in Australia committed to making discoveries and developing treatments to improve child and adolescent health in Australia and around the world. They are pioneering new treatments, trialling better vaccines and improving ways of diagnosing and helping sick babies, children and adolescents. It is one of the only research institutes in Australia to offer genetic testing to find answers for families of children with previously undiagnosed conditions.