CPCHILD

Health related quality of life

•  The authors have been careful to acknowledge the “limitation” of the CPCHILD that it relies on the parent perspective as a proxy for the child.  We discussed how other measures have found that parent report correlated closely with child report and also how it is difficult to know a child's comfort and emotions even with typically developing children.
• Dr. Narayanan states in his presentation on slide 14 that “What’s good for health may not always be good for QOL and What’s good for QOL may not always be healthy!” We discussed how many of our interventions -- surgery and resulting stay on unit 201, stretching and bracing, may not be good for QOL.
• We discussed using the CPCHILD at the Glenrose to measure change before and after a baclofen pump was inserted, before and after hip surgery and to measure change after severe acquired brain injury. We discussed how the CPCHILD is designed for children with cerebral palsy, GMFCS level IV and V, but may also be appropriate for children with other disabilities who are functioning at that level.  There are other measures that are more appropriate for higher functioning children. (See Life-H measure below).
•  “Unlike beauty, which rests in the eye of the beholder, quality of life is inherently an attribute of the reporter.” (slide 17) We discussed how comfort / pain and sleep may be universally important to quality of life but many other factors are very personal and the relative importance changes with each family.
• The CPCHILD can be time consuming to score manually. Below is the CPCHILD calculator excel program we created to make scoring easier.