Children with severe cerebral palsy usually require a lifetime of intensive medical care.
Treatment often involves major corrective surgeries to help properly re-align a child’s hips and spine. While it’s a widely known that the surgeries involve great risks, a big question still remains: Do these surgeries, when successful, actually improve child’s quality of life?
“I’ve always wondered what the outcomes were of surgeries,” said DiFazio. “We have a lot of X-ray data and range-of-motion data, but we don’t really know if it gets any easier to take care of these children; whether life gets a little bit easier after the surgery, and in what ways.”
To try and answer her own questions, DeFazio recently launched a research study based on surveys. The study takes a look at the “complete picture” of the physical, familial and financial impacts that surgeries have on children and their families.
“Before surgery, we ask the parents to tell us about their child’s quality of life, about their own lives as caregivers, and about the effects on the family as a whole – including siblings and on the family’s finances,” said DiFazio. “I’d like to see how the whole family is doing. These are questions that have never been addressed before in this population of severe CP patients, largely because we haven’t had the instruments to do so in a systematic way.”
According to a recent study from the Children’s Hospital at Johns Hopkins University, most children with severe CP will eventually require spinal surgery. Recovery from surgery usually takes about a week. Recent CDC data indicates that the total lifetime cost for treating a person with CP is approximately $900,000.
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Hopkins Children’s Study Finds Some Patients with Cerebral Palsy Have Asymmetric Pelvic Bones
Economic Costs Associated with Mental Retardation, Cerebral Palsy, Hearing Loss and Vision Impairment