Quality and Impact - Dr Elise Davis leads the world
Deakin
University is taking the global lead in improving the quality of life
of young children with cerebral palsy.
The ground breaking – and occasionally heart-breaking – work is being done by Dr Elise Davis, an award winning senior research fellow in the School of Health and Social Development.
In October, Dr Davis’s work won her the New Investigator Award sponsored by the International Society for Quality of Life Research.
“It is a project we have been working on for three years with clinicians both from the Royal Children’s Hospital and elsewhere around the world,” Dr Davis said.“In the past, there have been no quality of life questionnaires with which to evaluate the effectiveness of treatments for children with cerebral palsy.
“Evaluation in the past has tended to be based on measures of functional status.
“What we did was develop a quality of life questionnaire through talking to parents and children to understand what impacts on children’s lives.
“We assess the child’s perspective and the parents perspective however, in some cases, the children can’t report themselves, so we speak to their parents.
“When we produced our final questionnaire, we presented it at the American Academy of Cerebral Palsy and Development Medicine Conference in Boston.
“We suddenly discovered just how important our work was when we got requests from all over the world for the questionnaire.”
It is now being translated into a wide range of languages, including Hebrew and Chinese.
The next step, having come up with an effective way to assess the quality of life of young people with cerebral palsy, is to find just what actions can improve it.
“We have just received funding to work with the Riding for Disabled Association of Victoria, an organisation that takes people with disabilities horse-riding, in order to carry out a randomised control trial to determine whether therapeutic horse riding increases the quality of life of children with cerebral palsy,” Dr Davis said.
The questionnaire will also help doctors assess whether some of the treatments for cerebral palsy, including the use of Botox and also surgery, actually improve quality of life.
“This is one of the concerns of one of our team members, orthopaedic surgeon, Professor Kerr Graham,” Dr Davis said.
“Children often go through pain with their treatment, only to see more improvements in functioning.
Dr Davis said that one of the hardest parts of the research work had been the interviews with the young children.
“When we were deciding what sort of things we needed to have to include in the questionnaire, we spoke to a lot of people, both parents and children,” she said.
“We interviewed a nine year old who was concerned what would happen when she grew up and her mother could no longer lift her out of her wheel chair,” she said.
“You can’t help but be touched by moments like that. How must it be to be growing up with those sorts of fears so young?”
A less emotional but equally interesting aspect of the research work was looking at the difference in the way children and adults look on what constitutes quality of life.
“Children see life differently,” Dr Davis said.
“That’s why it is important to understand that Quality of Life for children is assessed in a different way to adults.
“It is something that under Professor Elizabeth Waters here at Deakin we are certainly developing enormously. It is a whole new field of its own and one we need to fully understand.
“The world in which children are growing up now is vastly different from that of previous generations. If they are to have happy, fulfilling childhoods in this new environment, we need to know what they believe is a good quality of life, not just what we adults think will make them happy."