Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=164950
Story Retrieval Date: 5/22/2013 6:52:24 PM CST
Children with epilepsy say their lives aren’t so bad, according to a study from the University of California at Los Angeles. Researchers found a discrepancy in how children who have epilepsy rate their quality of life compared to how the parents rate their child’s quality of life.
“Going into it, we thought there may be differences. We knew there were differences reported in other chronic diseases,” said Dr. Christine Bower Baca, lead study author and clinical instructor in the UCLA Department of Neurology.
The study, published in this month's online edition of Value in Health, looked at a group of Connecticut children with predominately well-controlled epilepsy who also had a “healthy” sibling. Researchers analyzed how the child with epilepsy rated his or her quality of life compared with how the child rated the healthy sibling's quality of life, then asked parents to do the same. As a whole, parents said their “sick” child’s quality of life was worse than that of the healthy child's quality of life, whereas the child with epilepsy rated both about the same.
Some argue the “disability paradox” might be responsible for these results. According to a UCLA statement, this occurs when people assume individuals who have chronic illness or a disability are unsatisfied with their lives, which may not always be the case.
Baca said other factors also could play a role in the study’s findings.
“The kids kind of live in the moment, and they’re not understanding the long-term implications and the challenges they might face with having a chronic disease like epilepsy,” Baca said. “It’s not that one person is reporting the ‘right’ answer, per say, but that they have different perspectives.”
Stacey Pigott of Wilmette has 8-year-old twin sons. Evan has epilepsy; his brother does not. Although she disagrees with the notion of a disability paradox, Pigott said the study’s findings didn’t surprise her.
“At the end of the day, don’t we want our kids to feel they’re going through life as normally as possible?” said Pigott, who is also on the research review board for CURE, a Chicago-based non-profit organization dedicated to epilepsy research. “The only danger with that is if they’re going through it not understanding the limitations of their disorders.”
The UCLA study shows children with epilepsy and their parents disagree in regard to qualify of life, but perhaps the bigger question is why the two groups disagree. It’s important to recognize these varying perspectives, Baca said.
“We do need to make sure we’re educating children, as they’re getting older and transitioning into becoming adults, that they’re educated about their disorder and the implications associated with it,” she said. “Care’s not only about giving patients medicine and surgery, it’s more than that. It’s making sure they have the services they need.”
Pigott said her 8-year-old son might not be capable of truly evaluating his quality of life because of the disorder’s developmental impact.
“For the vast majority of epilepsy patients, when they have a seizure they have no memory of having a seizure, which is a blessing and a curse,” she said. “They want to proclaim their normalcy and say they’re fine.”
Society might also play a role in the discrepancy, Pigott suggested.
“For so long you have epilepsy not being discussed, being hidden within families, so in order to kind of change that mindset I think the pendulum swung a little too far the wrong way,” she said.
The child is the patient, but the child’s parents also bear epilepsy's burden. This can also contribute to the disparity found in the UCLA study, Baca said.
“Parents are very aware -- it’s their job to worry about their children. They’re more aware of the challenges the children are facing,” Baca said. “Parents may be thinking about that and have anxiety about that.”
A child’s epilepsy often causes parents to live “in fear of the seizure,” Pigott added. Though her son is doing well, and his epilepsy is mostly controlled, her fear the seizures could come back never goes away. These are things she said she tries to shield from her child.
“We’re encouraging our kids to be as normal as possible,” Pigott said. “But behind the scenes we are the ones attending the [Individualized Education Program ] meetings, scheduling the therapy, making sure we never run out of medications...They’re not thinking about when we travel, and you never put your medications into your luggage because god forbid your luggage gets lost. You can’t check that, you can’t run that risk. The kids don’t see that. As parents, you’re always one step ahead.”
The main thing to take away from the study, Baca said, is that these varying perspectives must be addressed -- in research studies, in clinical trials and in disease-management programs -- to accurately help children with epilepsy make the transition into adulthood.
For Pigott and her family, it’s a balancing act.
“We do need to kind of empower these kids to know that they can do whatever they want to do with epilepsy,” Pigott said. “Yet at the same time teach them a healthy respect for the power of this disorder.”