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Researchers seeking participants in child cognition study

May 24, 2012

Trent University researchers are seeking families of children who have epilepsy to participate in a project investigating cognitive processes of youngsters aged seven to 13.

The project, which is an extension of a larger study being led by Dr. Nancie Im-Bolter, is investigating the relationship between language and literacy in novice and skilled young readers with typical and atypical development.

Katharine Bailey, a researcher at the language and cognition laboratory at Trent University’s Oshawa campus, is involved with the segment of the research investigating how language and literacy skills in children affected by epilepsy differs from children with typical development.

The research will also investigate how aspects of epilepsy — seizure control, seizure type and treatment, for instance — affect language and literacy. Are children more at risk of having language and literacy challenges when seizures began at an early age? Do tonic-clonic seizures affect language and literacy skills differently than absence seizures? These are examples of the questions the study is aiming to answer.

With about 30 per cent of children with epilepsy affected by learning challenges, Bailey says the study is an important step in discovering more about the relationship between seizure disorders and language and literacy.

“Most (children with epilepsy) have average or higher intelligence but they have unique experiences that might hinder their learning, so we want to understand the cognitive processes in children with epilepsy and how those processes differ so we can eventually inform educators and help them form tools that can help the children be successful learners,” says Bailey.

“Hopefully, we can get a clearer picture of those unique challenges that children with epilepsy face when it comes to learning, so we can understand how they learn and we can promote learning success in the classroom.”

Families interested in participating in this project will be asked to provide medical information related to diagnosis, medications and seizure types. As part of the study, children will be asked to take part in a series of activities and games.

Parents will receive a summary of their child’s functioning level on the standardized measures administered.

Beyond the initial forms and testing sessions, families will not be asked for any additional participation but will be welcome to request a report of any findings.

Families interested in having their children participate in the project can get more information by calling Bailey at 905-435-5102, ext. 5035, or by e-mail at katharinebail(at)trentu.ca.

If you have any feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel

 

Epilepsy community urged to alert MPs about drug-shortage issue

May 17, 2012

Are you affected by a drug shortage?

Contact your health-care provider if your pharmacy is unable to fill your prescription. People with epilepsy should not make any changes to their treatment (i.e. skipping doses, reducing the dose, or discontinuing a drug) without consulting their health-care provider. Your physician or nurse practitioner can discuss the potential shortage of a drug with you and develop a treatment plan to most safely manage your epilepsy condition.

People living with seizure disorders are being urged to contact their MPs to press the federal government to take a leadership role in the effort to address the issue of medication shortages.

Medication shortages exist at a global level and have been affecting a wide variety of pharmaceuticals, including those taken by people to control seizures. While the federal government has begun to make inroads to addressing the issue, there’s still much more that needs to be done, says Suzanne Nurse, an epilepsy expert, who has been volunteering with the Best Medicine Coalition and the Canadian Epilepsy Alliance on the drug-shortage issue.

Nurse points out that federal Health Minister Leona Aglukkaq went to the pharmaceutical industry last year and asked sector leaders to deal with the situation. As a result, industry representatives, along with other stakeholders, including the Canadian Medical Association and the Canadian Pharmacists Association, came together to form a working group consisting of several stakeholders to address the drug-shortage issue.

While there has been some forward movement on the reporting of drug shortages since the working group’s formation, sporadic medication shortages continue to put people with epilepsy at risk, says Nurse.

She notes it’s mainly older drugs that have been affected by these unprecedented shortages over the past two years.

The epilepsy community relies on access to a variety of medications, and many anti-epileptic drugs came to market before 1970. The higher prevalence of drug shortages among older medications is a serious concern for those patients who have obtained the best seizure control with an older drug or who benefit from the cost effectiveness of an older, off-patent medication, Nurse says. 

She adds that people have had life-threatening seizures because of the sudden discontinuation of their medication and being switched to a new drug.

“Epilepsy is not a condition where you take one drug today and a different one tomorrow, people need a consistent drug supply,” says Nurse.

“People that are concerned about this should contact their MP and let them know that this is a concern for them and that they would like to see the federal government taking a leadership role on this important issue.”

While some of the drugs that were in short supply are available again, two epilepsy medications — Zarontin (ethosuximide) and valproic acid — are among the current drug shortages.

Unfortunately, the reporting websites that have been set up to provide information about drug shortages do not have any details about the lack of Zarontin capsules and the information related to valproic acid shortages is incomplete, says Nurse.

The best source for people regarding availability of a prescription medication is their pharmacist.

“If your epilepsy medication is in short supply it is very important to contact the health-care provider who treats your epilepsy condition,” says Nurse.

Medication shortages can also vary between regions — even between pharmacies — according to the Epilepsy Support Centre’s website.  The site also notes that some medications once in short supply, Phenobarbital, for example, have seen increased availability.

To provide a first-hand account of the stress the medication-shortage issue is having on families, the mother of a teenager living with a seizure disorder tells the Voices of Epilepsy she visited a pharmacist May 16 to ask about the availability of Apo-Divalproex (divalproex sodium or valproic acid), which her daughter takes to control seizures. The pharmacist said the medication is expected to be delivered June 17. 

“That doesn’t seem so bad, but the medication has been on back-order since January,” the mother says. “I have no idea if the back-order date will keep getting pushed back until after the pharmacy runs out of the drug, and the possibility of that happening is quite sobering.”

Like Nurse, the London, Ont.-based Epilepsy Support Centre is urging people affected by the neurological disorder to contact their MP to raise awareness of the matter.

“Shortages of drugs used to treat epilepsy can have life-threatening or life-altering consequences,” the site says.

“This situation needs to be resolved so that people living with epilepsy in Canada are not at risk. You can help by contacting your federal member of Parliament.”

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel

SUDEP conference aiming for mass engagement, increased awareness

May 10, 2012

An upcoming three-day conference near Chicago in June will bring people representing clinical, basic science and patient/family communities together to get important information related to sudden unexpected death in epilepsy (SUDEP).

“We’re trying to bring those three groups together to participate in a meeting that will still be high-level academic with some very high-level basic science and clinical research presented, but interspersed with sessions that deal with issues such as talking about SUDEP, how we talk about and why we talk about,” explains Dr. Elizabeth Donner, a Toronto-based neurologist and one of the Partners Against Mortality in Epilepsy (PAME) conference organizers.

While the conference will have a large scientific component, organizers are underscoring the importance of engagement from the non-scientific community. People with epilepsy and their families and caregivers can use the event as an opportunity to learn about ways to contribute to research, for example.

SUDEP is a serious issue facing people with epilepsy, says Donner. SUDEP is an unexpected and unexplained death occurring in people with epilepsy. SUDEP can be related or unrelated to a seizure.

With a rate of approximately one death in 1,000 people affected by epilepsy per year, SUDEP is more common than many perceive, says Donner. When the rate of SUDEP is calculated to include only people with uncontrolled epilepsy, or seizures not regulated with medication, the number spikes to about one in 100.

“It’s a serious problem and there has been reluctance amongst people with epilepsy and their caregivers to speak about it,” says Donner.

Donner hypothesizes that the reluctance to talk about SUDEP stems from people believing there’s nothing that can be done to prevent it.

“One of the most important outcomes that we’re hoping for from the meeting is improved awareness of the condition,” says Donner. “(We hope) that every person that attends this meeting goes back to their own hospital, community, office — wherever they’ve come from — and talks a little bit about this.”

Increased awareness, she adds, will help move forward the scientific community researching SUDEP.

“Awareness is the first step in advancing the cause of finding a method of prevention,” says Donner.

In addition, one of the goals of the conference is to inform people that there are ways to reduce the risk of SUDEP.  For a person with epilepsy, working with their health-care providers to reduce the frequency of seizures is the most effective way to reduce the risk of SUDEP.

Tamzin Jeffs, who, along with Donner, co-founded SUDEP Aware, an organization dedicated to raising awareness and understanding of SUDEP, says PAME will be an excellent forum for people living with or bereaved by epilepsy to share their experiences.

“PAME will improve awareness of SUDEP research currently underway and in planning,” says Jeffs, who will be one of the moderators at the PAME sessions.

“Research participation opportunities, available to people living with epilepsy and people bereaved by epilepsy, will also be discussed.  Taking part in research studies can help bring some comfort, hope and a sense of contribution to the families.”

The conference will be held June 21-24 at the Hilton Orrington in Evanston, Illinois.

More information, including registration details, can be found by clicking here.

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. 

Writer: Deron Hamel

Institute of Medicine Report on Epilepsy

May 4, 2012

On March 30, 2012 the Institute of Medicine (IOM) released a report on the public health dimensions of epilepsy. Epilepsy Across the Spectrum: Promoting Health and Understanding has a number of recommendations to engage people in advocacy. The goal as always is to improve the lives of people living with epilepsy. Recommendations include:

  • improving access to care
  • coordinating public awareness efforts
  • greater education about epilepsy for people living with the disorder and their caregivers
  • engaging people in advocacy for improved epilepsy care and services

The Canadian connection

The IOM is an American-based independent, nonprofit organization that provides authoritative advice to decision makers and the public. Despite being rooted in the United States, the report includes Canadian data. As such, many of the findings apply to Canadians just as much as it concerns our American neighbours.

Canadian epilepsy experts take an active role in the IOM, offering their input for reports such as this one. Among these experts are:

  • Dr. Lionel Carmant
    • pediatric epilepsy specialist at Sainte-Justine Hospital in Montréal and neuroscience researcher with the Université de Montréal
    • a member of the committee that reviewed the evidence and prepared the IOM report
  • Dr. Nathalie Jetté and Dr. Samuel Wiebe
    • members of the Comprehensive Epilepsy Programme at Foothills Hospital in Calgary
    • among the experts who reviewed a draft of the report

The IOM report makes reference to the National Population Health Study on Neurological Conditions, an on-going study conducted by researchers across Canada. Epilepsy is one of the 14 priority neurological conditions of this health study.

Epilepsy Across the Spectrum

The main themes of the report are:

  • Epilepsy is a common and complex neurological disorder.
  • Epilepsy often affects quality of life.
  • Whole-patient perspective needed.
  • Effective treatments available but access falls short.
  • Data is needed to improve epilepsy knowledge and care and to inform policy.
  • Strengthen health professionals’ education.
  • Bolster education efforts for people with epilepsy and their families.
  • Eliminate stigma.