Children with cerebral palsy (CP), the most common form of physical disability in children, all experience at least some difficulties in communication and movement. Those with the most severe forms of CP sometimes undergo reconstructive surgery on their hips and spine to correct dislocations or scoliosis. But do these operations actually improve quality of life?
“I’ve taken care of children with cerebral palsy for 21 years, and I’ve always wondered what the outcomes were of the surgeries,” says Rachel DiFazio, a nurse practitioner with the CP Program at Children’s Hospital Boston. “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.”
These questions have been asked in previous surveys, but these have been tailored to children with a lower level of severity. Most of their questions, such as questions about a child’s ability to play sports or lift heavy objects, don’t apply to children with severe CP.
DiFazio, who is also working towards a PhD at Boston College’s William F. Connell School of Nursing, wants to gain a deeper understanding of the outcomes of CP hip and spine surgeries from the parents’ point of view. “These children are non-ambulatory, non-communicative, and often have severe seizures and other medical conditions,” she says. “We can’t just ask them whether their quality of life has improved. It has to be through the parent’s perceptions of how their child is doing.”
With a Patient Services Research Grant, she has launched a survey-based research study aimed at drawing a complete picture of the physical, familial and financial impacts – good or bad – of the surgery.
“Before surgery, we ask the parents to tell us about their child’s quality of life, about their own lives as caregivers, and also about effects on the family as a whole, including those on any siblings and on the family’s finances,” DiFazio says. “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.”
Now about a third of the way to her recruitment goal, DiFazio has received enthusiastic support. “The families are very pleased to take part,” she says. “These children on the most severe end of the CP spectrum haven’t been well studied, and the families are eager to share their stories and talk about how their children are doing. I think they enjoy participating.”
DiFazio will survey the families again six weeks, three months, six months and one year after the operation. She hopes her findings will give parents the information they need in order to be better prepared for their child’s surgery and have valid expectations of what it might achieve.
“It’s always hard to tell parents before the surgery how their child is going to do after, because few studies have been done to see in what ways we help make these children better. But I think this could really help parents make better decisions by making them more aware of the benefits, risks, and possible outcomes.”
[Ed. Note: This is the third in a series about Children’s Hospital Boston staff who received Patient Services Research Grants in 2011. This grant program engages the professional staff in the Department of Patient Services in high-quality pediatric research with the ultimate goal of improving child health.]