Deakin University is taking the global lead in improving the quality of life of children with cerebral palsy.
Dr Elise Davis and Professor Elizabeth Waters from Deakin's School of Health and Social Development have developed a world-first questionnaire aimed at determining if treatments for children with cerebral palsy improve their overall wellbeing, not just their mobility.
"Until now, there have been no questionnaires which evaluate how treatments impact on the lives of children with cerebral palsy. Evaluation has tended to be based only on measures of physical ability," Dr Davis said.
The questionnaire will help doctors assess whether treatments for cerebral palsy, such as the use of Botox and surgery, actually improve quality of life.
"Treatment can impact on a child's life in a number of ways," Dr Davis said.
"At the moment, we can only measure whether a treatment has increased a child's functioning. With our new questionnaire, we can also see whether treatment impacts on how a child feels about their life."
For the past four years Dr Davis has been working with clinicians from the Royal Children's Hospital and elsewhere around the world to better understand what impacts on the children's lives.
"We interviewed children and parents and asked them what they thought the children needed to have a good quality of life," Dr Davis said.
"While good physical health was important, other aspects of life were equally as important such as good relationships with family and friends, being involved in activities, being surrounded by a healthy family, being happy with themselves, getting on well at school, having access to the services they needed and being accepted by their community."
Dr Davis said that an interesting aspect of the work looked at the difference in the way children and adults consider what constitutes quality of life.
"Children see life differently to their parents," she said.
Dr Davis said that the children tended to report a higher quality of life than the parents.
"This has been shown in other research and might be explained by the fact that children have adjusted to their situation, or in fact, are not aware of what they could be perceived as missing out on.
"Furthermore, it is very difficult for anyone to assume what another person's quality of life is like. For children, because of age or cognitive ability, sometimes we have to rely on parent proxy reports."
The international significance of the questionnaire became apparent after Dr Davis presented it at the American Academy of Cerebral Palsy and Development Medicine Conference in Boston recently.
"We were really pleased that we got requests from all over the world for the questionnaire," Dr Davis said.
It is now being translated into a wide range of languages, including Hebrew and Chinese.
Dr Elise Davis is available for interview and can be contacted on (03) 924 46131 or 0422 108 133. Dr Davis can also put journalists in touch with a family willing to be interviewed.
Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
Published on PsychCentral.com. All rights reserved.