Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Children with epilepsy say their quality of life is better than their parents think

17.05.2010
Children with epilepsy often face multiple challenges — not only seizures but learning, cognitive and school difficulties, side effects from medication, and, not surprisingly, social stigma from their peers.

It's no wonder parents say their children with epilepsy have a substantially worse quality of life than their other, healthy children. But ask a child with epilepsy about his or her life, and the answer? Not so bad.

Reporting in the current online edition of the journal Value in Health, lead study author Dr. Christine Bower Baca, a Robert Wood Johnson Clinical Scholar and a clinical instructor in the UCLA Department of Neurology, and her colleagues found that children with epilepsy say their quality of life is comparable to that of their healthy siblings.

Epilepsy is a common chronic neurological condition that can negatively impact physical, social and psychological function. The burden of epilepsy is large. Overall, approximately 3 million people in the United States have epilepsy, and for half of this population, the disorder first occurred during childhood.

Approximately 45,000 children under the age of 15 develop epilepsy each year. There are many causes of epilepsy in children, including problems with brain development before birth, lack of oxygen during or following birth, head injuries, tumors, prolonged seizures with fevers, genetics, or infections in the brain.

In the study, researchers assessed 143 children with epilepsy, matching each to a healthy, non-epileptic sibling as a control, and to their parents or guardians. The assessment was done by conducting personal interviews eight to nine years after a child's initial diagnosis, using the Child Health Questionnaire, a generic and well-established measure with both child and parent versions. The average age of the children with epilepsy when interviewed was 12.

The researchers found that parents' ratings of their children's quality of life were significantly lower for their children with epilepsy on 10 of 12 scales measuring such things as behavior, general health, self-esteem and physical function. In contrast, children with epilepsy rated their own quality of life on a par with their siblings.

Why such a difference? One possible explanation, Baca said, is known as the "disability paradox," the idea that having a chronic disease or a disability does not necessarily mean that a person is unsatisfied with his or her life, despite what others may think.

"In this regard, parental perception of their epileptic child may be distorted because of their perception that they have a child that is 'sick,'" Baca said. "Such a distortion could lead to an underestimate of the child's quality of life."

Also, the concerns of a child with epilepsy may differ from those of a parent.

"Children and parents may draw on different values and perspectives to evaluate quality of life and may not be aware of these different perspectives," Baca said.

Recognizing both perspectives is important in assessing outcomes in research studies, Baca noted, particularly in clinical trials evaluating anti-epileptic medications, and also in trials measuring outcomes after epilepsy surgery. Additionally, quality-of-life evaluations are an essential part of developing clinical disease-management programs that provide comprehensive treatment and education for children with epilepsy and families. Lastly, Baca said, understanding these potentially different, yet valuable, perspectives is important for developing appropriate support services targeted for children as they make the transition into adulthood.

Other authors on the study included Dr. Barbara G. Vickrey, Ron D. Hays and Stefanie D. Vassar, all of UCLA, and Anne T. Berg of Northern Illinois University. The authors report no conflict of interest.

Funding was provided by the National Institutes of Health and the Robert Wood Johnson Foundation Clinical Scholars Program.

The UCLA Department of Neurology encompasses more than a dozen research, clinical and teaching programs that cover brain mapping and neuroimaging, movement disorders, Alzheimer's disease, multiple sclerosis, neurogenetics, nerve and muscle disorders, epilepsy, neuro-oncology, neurotology, neuropsychology, headaches and migraines, neurorehabilitation, and neurovascular disorders. The department ranks first among its peers nationwide in National Institutes of Health funding.

For more news, visit the UCLA Newsroom and follow us on Twitter.

Mark Wheeler | EurekAlert!
Further information:
http://www.ucla.edu

More articles from Studies and Analyses:

nachricht Drone vs. truck deliveries: Which create less carbon pollution?
31.05.2017 | University of Washington

nachricht New study: How does Europe become a leading player for software and IT services?
03.04.2017 | Fraunhofer-Institut für System- und Innovationsforschung (ISI)

All articles from Studies and Analyses >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Can we see monkeys from space? Emerging technologies to map biodiversity

An international team of scientists has proposed a new multi-disciplinary approach in which an array of new technologies will allow us to map biodiversity and the risks that wildlife is facing at the scale of whole landscapes. The findings are published in Nature Ecology and Evolution. This international research is led by the Kunming Institute of Zoology from China, University of East Anglia, University of Leicester and the Leibniz Institute for Zoo and Wildlife Research.

Using a combination of satellite and ground data, the team proposes that it is now possible to map biodiversity with an accuracy that has not been previously...

Im Focus: Climate satellite: Tracking methane with robust laser technology

Heatwaves in the Arctic, longer periods of vegetation in Europe, severe floods in West Africa – starting in 2021, scientists want to explore the emissions of the greenhouse gas methane with the German-French satellite MERLIN. This is made possible by a new robust laser system of the Fraunhofer Institute for Laser Technology ILT in Aachen, which achieves unprecedented measurement accuracy.

Methane is primarily the result of the decomposition of organic matter. The gas has a 25 times greater warming potential than carbon dioxide, but is not as...

Im Focus: How protons move through a fuel cell

Hydrogen is regarded as the energy source of the future: It is produced with solar power and can be used to generate heat and electricity in fuel cells. Empa researchers have now succeeded in decoding the movement of hydrogen ions in crystals – a key step towards more efficient energy conversion in the hydrogen industry of tomorrow.

As charge carriers, electrons and ions play the leading role in electrochemical energy storage devices and converters such as batteries and fuel cells. Proton...

Im Focus: A unique data centre for cosmological simulations

Scientists from the Excellence Cluster Universe at the Ludwig-Maximilians-Universität Munich have establised "Cosmowebportal", a unique data centre for cosmological simulations located at the Leibniz Supercomputing Centre (LRZ) of the Bavarian Academy of Sciences. The complete results of a series of large hydrodynamical cosmological simulations are available, with data volumes typically exceeding several hundred terabytes. Scientists worldwide can interactively explore these complex simulations via a web interface and directly access the results.

With current telescopes, scientists can observe our Universe’s galaxies and galaxy clusters and their distribution along an invisible cosmic web. From the...

Im Focus: Scientists develop molecular thermometer for contactless measurement using infrared light

Temperature measurements possible even on the smallest scale / Molecular ruby for use in material sciences, biology, and medicine

Chemists at Johannes Gutenberg University Mainz (JGU) in cooperation with researchers of the German Federal Institute for Materials Research and Testing (BAM)...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Plants are networkers

19.06.2017 | Event News

Digital Survival Training for Executives

13.06.2017 | Event News

Global Learning Council Summit 2017

13.06.2017 | Event News

 
Latest News

Supersensitive through quantum entanglement

28.06.2017 | Physics and Astronomy

X-ray photoelectron spectroscopy under real ambient pressure conditions

28.06.2017 | Physics and Astronomy

Mice provide insight into genetics of autism spectrum disorders

28.06.2017 | Health and Medicine

VideoLinks
B2B-VideoLinks
More VideoLinks >>>