More Doctors Asking CP Patients about Quality of Life

“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,” said Dr. Elise Davis, of the Deakins School of Health and Social Development.

Dr. Davis, and Professor Elizabeth Waters have developed the first doctors' questionnaire that aims to determine whether cerebral palsy treatments are improving their overall wellbeing, not just their physical abilities.

“Treatment can impact on a child's behavior in a number of ways,” said Davis.

“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.”

Dr. Davis has been working on this questionnaire for four years with the help of clinicians from the Royal Children's Hospital, and other places around the world to try to gain a better understanding on the factors that influence a child's quality of life and happiness.

“We interviewed children and parents and asked them what they thought the children needed to have a good quality of life,” 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.”

One thing Dr. Davis learned was that “Children see life differently to their parents.” Davis found that the children tended to say their quality of life was better than their parents reported.

“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.”

When Dr. Davis presented the questionnaire to the American Academy of Cerebral Palsy and Development Medicine Conference in Boston, people began requesting the questionnaires from all around the world. It is now being translated into many languages, including Chinese and Hebrew.