News release: Better access to care and more education needed to improve lives of children living with stroke

Dr. Gabrielle deVeber says stroke is often unrecognized, untreated in children

(Ottawa) — Research trailblazer Dr. Gabrielle deVeber urged better access to care and improved education for clinicians and the public around pediatric stroke – a condition that affects at least 10,000 Canadian children –  during the prestigious Hnatyshyn Lecture at the Canadian Stroke Congress here today. 

More than 700 delegates to the Canadian Stroke Congress heard Dr. deVeber of Toronto’s SickKids Hospital trace the Canadian origins of pediatric stroke research and the development of the first registry right here in Canada. Her work helped identify the incidence of strokes in babies, children and teens.

“Gabrielle deVeber has had a huge impact in many ways,” says pediatric neurologist Dr. Adam Kirton, head of the Calgary Pediatric Stroke Program, a leading researcher and one of her former trainees. “But the single largest outcome may be how she has brought together people from around the world to impact the care of children with stroke and their families.”

Childhood stroke often not diagnosed until it occurs again

The exclusion of pediatric stroke from stroke awareness campaigns means that stroke in children often goes unrecognized and untreated. A child with a weak wrist or who walks with a limp may be taken to get an x-ray and, when no break or strain is found, the investigation ends. It’s not until the child has a subsequent stroke that the problem is identified. There are at least 500 children who have a stroke each year in Canada, many of whom live with mild and moderate deficits that last their lifetimes. “The burden of illness is significant and enduring,” Dr. deVeber says.

She urged health professionals at the Congress to read and apply stroke best practices. The Canadian best practices stand alone in having integrated pediatric guidelines. She called for increased funding for research and the training of more health professionals in the field. Because the field is so small, only Calgary and Toronto have robust pediatric stroke programs in Canada. “We have graduated 20 pediatric neurologists in Canada since 1995 and many have gone to different parts of the world – the Philippines, Germany and other parts of Europe, South America and Asia,” she says. “We are left with a handful of pediatric neurologists who are trained to provide stroke care.”
 
But, while challenges remain, Dr. deVeber also described enormous progress over 30 years. In the early 1990s, Dr. deVeber, a stroke neurologist at SickKids, partnered with her mentor, the late Dr. Maureen Andrew, a hematologist at McMaster University, to study clots in the brains of children – how they formed, where they formed, what conditions led to the formation, and why they reoccur.

“We knew that, after the newborn period, there was recurrence and untreated children have two, three and sometimes many more strokes,” Dr. deVeber says. “But in the early 1990s, we didn’t know the best way to prevent and treat them.” Their research focused on ischemic strokes – the most common kind of strokes that result from blood clots. In children, underlying origins of the clots are different than in adults. 

First pediatric stroke registry helped identify causes

Because there was no systematic research into pediatric stroke at the time, Drs deVeber and Andrew developed a program to follow children who came to McMaster and SickKids. They began a national pediatric stroke registry that enrolled patients for 10 years and then did five years of follow-up.

“We enrolled infants and children with stroke in Canada by collaborating with all 16 pediatric specialty hospitals in Canada…This allowed enrolment of more than a thousand children with stroke during the 1990s and we were able to get a good idea of the incidence of pediatric stroke because of our national health-care system,” Dr. deVeber says. “There wasn’t widespread awareness at the time and it was only when CT and MRI scans became feasible for children that more and more children with stroke were identified.”

Finally, physicians were able to identify risk factors, incidence, treatments and to publish systematic research. Strokes in children most often result from focal inflammation in their arteries, congenital heart disease, infection, hematological disorders or, in the case of perinatal stroke, an embolism likely from the placenta.

The first registry closed in 2001 and, in 2002, Dr. deVeber led in the development of a larger international registry – the International Pediatric Stroke Study – with 200 collaborators in 40 countries. Since 2003, 6,000 patients with ischemic stroke have been enrolled and new discoveries have been made from the findings. 

Advent of acute stroke care 

Early recognition and system-wide approaches to pediatric stroke care are particularly urgent with the advent of neuroprotective and emergency treatment strategies that could benefit children. But expertise in the unique aspects of the infant and child’s brain and pediatric stroke must be central in the team approach to optimize safety, she says. “Children are not ‘little adults’ when it comes to their blood, arteries, hearts and brains.”
“This country can continue to play a leadership role in pediatric stroke,” Dr. deVeber says. 

Among highlights today at stroke congress:
  • Vaping and stroke: Dr. Robert Reid of the Ottawa Heart Institute reviews the risks of smoking and vaping and the link to cardiovascular disease and stroke. People who smoke have strokes 10 to 15 years earlier than non-smokers and at a rate as much as three times higher than the general population. Most people who smoke at the time of their stroke are still smoking a year later. Even one or two cigarettes a day increases the risk of stroke and heart attack. Dr. Reid says the most common outcome for cigarette smokers who use vaping as a path to quitting is that they become dual users. “When we have other effective treatments, there is no real reason to steer people to vaping as a cessation method,” he says. Dr. Reid warns that many of the newer vaping products deliver as much nicotine as cigarettes and flavouring agents may also cause damage to blood vessels. He says large segments of the vaping industry are now owned by tobacco companies who may see vaping as a way to get young people hooked on nicotine and as a gateway to their other products. “There is mounting evidence linking vaping to short- and long-term health harms, including death, and we are seeing a new generation become addicted. We need immediate and comprehensive action to regulate these products in the same way as tobacco products to protect young people,” says Dr. Andrew Pipe, Chair of the Board of Directors, Heart & Stroke. (Room 205, 1:30-2:30 pm)
  • The Grey Tsunami is approaching!: Canada’s health-care system needs to adjust to prepare for a doubling in stroke rates and many more people living with long-term disability from stroke. Delegates heard prevention expert Dr. Andrew Pipe, chair of the Board of Heart & Stroke, stroke neurologist Dr. Andrew Demchuk, head of the Calgary Stroke Program, health systems expert Dr. Louise Clement of Health Standards Organization, and Dr. Nick Ward, a rehabilitation research expert from the UK discuss the huge impact an expanding and aging population will have on health resources – and what is needed to get ready! (Canada Hall 1, 8:30-10:00 am)
  • Location, location, location! Where you live a critical factor in access to stroke care: A series of surveys of 630 hospitals and 54 urgent care and health centres in Canada has identified gaps in access to stroke care from one part of the country to another, according to a Heart & Stroke report.  “While the availability of critical stroke care has expanded across Canada in the last 10 years, whether you get access to the latest imaging, surgical techniques, and rehabilitation therapies depends on where you live,” says Dr. Patrice Lindsay, Director of Stroke and Systems Change at Heart & Stroke. Researchers used geospatial mapping and survey results to help health planners identify areas that require special attention in order to improve access to new therapies and technologies. Provincial mortality data show increased mortality in provinces with less advanced stroke services. (Room 206, 11:30-12:00)
  • Pushing the boundaries of clot-busting drugs. Can the treatment window be extended for patients who don’t make it to the hospital within the first few hours of stroke? Research reveals benefits and risks. (Room 205 & 207, 11:20- 11:40 am)
  • When language disappears: A workshop on communicating with someone who experiences aphasia (communication challenges) after stroke. At least a third of people after stroke have trouble speaking, writing, reading or understanding language. People with aphasia have significant challenges in recovery and are often treated as if they have cognitive issues because they have challenges with speech. (Room 207, 1:30-3:30 pm)
  • Stroke Recovery in Motion: A new Canada-wide initiative, headquartered at the University of Ottawa, helps communities put in place evidence-based exercise programs to help people recover from stroke. (Room 201, 1:30-1:50 pm)
Stroke facts
  • A stroke happens when blood stops flowing to a part of the brain or bleeding occurs in the brain, leading to damage to brain cells.
  • 62,000 strokes occur in Canada each year – that is one stroke every nine minutes.
  • Each year, more than 13,000 Canadians die from stroke.
  • 80% of people survive stroke.
  • Brain cells die at a rate of 1.9 million per minute after stroke.
  • After stroke 60% are left with some disability; 40% require more intense rehabilitation and support.
  • More than 400,000 Canadians live with long-term disability from stroke and this will almost double in the next 20 years.
  • Stroke can happen at any age. Stroke among people under 65 is increasing and stroke risk factors are increasing for young adults.

Follow us on Twitter @strokecongress, #StrokeCongress. 

Statements and conclusions of study authors are solely those of the study authors and do not necessarily reflect H&S or CSC policy or position. Heart & Stroke and the Canadian Stroke Consortium make no representation or warranty as to their accuracy or reliability.

Canadian Stroke Congress

Co-hosted by Heart & Stroke and the Canadian Stroke Consortium, the Canadian Stroke Congress is a uniquely Canadian forum for experts to share the latest research findings, exchange ideas, and make the connections which will change the future of stroke. It brings together researchers, neurologists, nurses, rehabilitation specialists, policy makers, health system decision makers – and many others – in an unprecedented opportunity to improve the brain health of Canadians. (strokecongress.ca)

About Heart & Stroke

Life. We don’t want you to miss it. That’s why Heart & Stroke leads the fight against heart disease and stroke. Together, we are working to prevent disease, save lives and promote recovery through research, health promotion and public policy. (heartandstroke.ca)

Canadian Stroke Consortium

The Canadian Stroke Consortium is the professional organization for stroke neurologists, leading continuing education, advocacy and research for healthcare professionals. (strokeconsortium.ca)

For story ideas, the embargoed Congress media releases and media interviews:
Cathy Campbell
Heart & Stroke
613-852-2303
cathy@canadianstroke.ca