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 Smart Data Transformation – Surfing the Big Wave
02.12.2016 | Fraunhofer-Institut für Angewandte Informationstechnik FIT

nachricht Climate change could outpace EPA Lake Champlain protections
18.11.2016 | University of Vermont

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: Significantly more productivity in USP lasers

In recent years, lasers with ultrashort pulses (USP) down to the femtosecond range have become established on an industrial scale. They could advance some applications with the much-lauded “cold ablation” – if that meant they would then achieve more throughput. A new generation of process engineering that will address this issue in particular will be discussed at the “4th UKP Workshop – Ultrafast Laser Technology” in April 2017.

Even back in the 1990s, scientists were comparing materials processing with nanosecond, picosecond and femtosesecond pulses. The result was surprising:...

Im Focus: Shape matters when light meets atom

Mapping the interaction of a single atom with a single photon may inform design of quantum devices

Have you ever wondered how you see the world? Vision is about photons of light, which are packets of energy, interacting with the atoms or molecules in what...

Im Focus: Novel silicon etching technique crafts 3-D gradient refractive index micro-optics

A multi-institutional research collaboration has created a novel approach for fabricating three-dimensional micro-optics through the shape-defined formation of porous silicon (PSi), with broad impacts in integrated optoelectronics, imaging, and photovoltaics.

Working with colleagues at Stanford and The Dow Chemical Company, researchers at the University of Illinois at Urbana-Champaign fabricated 3-D birefringent...

Im Focus: Quantum Particles Form Droplets

In experiments with magnetic atoms conducted at extremely low temperatures, scientists have demonstrated a unique phase of matter: The atoms form a new type of quantum liquid or quantum droplet state. These so called quantum droplets may preserve their form in absence of external confinement because of quantum effects. The joint team of experimental physicists from Innsbruck and theoretical physicists from Hannover report on their findings in the journal Physical Review X.

“Our Quantum droplets are in the gas phase but they still drop like a rock,” explains experimental physicist Francesca Ferlaino when talking about the...

Im Focus: MADMAX: Max Planck Institute for Physics takes up axion research

The Max Planck Institute for Physics (MPP) is opening up a new research field. A workshop from November 21 - 22, 2016 will mark the start of activities for an innovative axion experiment. Axions are still only purely hypothetical particles. Their detection could solve two fundamental problems in particle physics: What dark matter consists of and why it has not yet been possible to directly observe a CP violation for the strong interaction.

The “MADMAX” project is the MPP’s commitment to axion research. Axions are so far only a theoretical prediction and are difficult to detect: on the one hand,...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

ICTM Conference 2017: Production technology for turbomachine manufacturing of the future

16.11.2016 | Event News

Innovation Day Laser Technology – Laser Additive Manufacturing

01.11.2016 | Event News

#IC2S2: When Social Science meets Computer Science - GESIS will host the IC2S2 conference 2017

14.10.2016 | Event News

 
Latest News

Porous crystalline materials: TU Graz researcher shows method for controlled growth

07.12.2016 | Materials Sciences

Simple processing technique could cut cost of organic PV and wearable electronics

06.12.2016 | Materials Sciences

3-D printed kidney phantoms aid nuclear medicine dosing calibration

06.12.2016 | Medical Engineering

VideoLinks
B2B-VideoLinks
More VideoLinks >>>