International team tracks future for children with cerebral palsy

The first question of parents of a child with cerebral palsy is about their child’s future physical capabilities. To date, health professionals have had little information to share.

Now an international team of researchers, including those at McMaster, has established a trend line for people with cerebral palsy from age one to 21, describing the developmental paths for their mobility and looking after themselves in day-to-day tasks like dressing.

Cerebral palsy (CP) results from an injury to the developing brain occurring before, during or shortly after birth from, for example, lack of oxygen to the brain or an infection such as meningitis. CP affects two out of 1,000 children.

“The diagnosis of cerebral palsy is very scary for any parent, but we’re glad now we can give a better idea of the child’s developmental future,” said Jan Willem Gorter, second author of the paper, professor of pediatrics at McMaster and director of its CanChild research centre.

“Children are in a constant state of ‘becoming’, so it is important to know what the child can do now, but we are equally interested in how that capacity will be used tomorrow.  The developmental curves allow us to think about the future in a positive way right from the start. A good prognosis also allows us to have the appropriate supports in place.”

Jan Willem Gorter helps patient Kyle Chambers navigate the transition from the pediatric to adult health-care system.

The trajectories, published in The Lancet Child & Adolescent Health, comes from longitudinal studies following a total of 551 children, teens and young adults with CP by CanChild in Canada and the Pediatric Rehabilitation in Research Program in the Netherlands.

The collaboration between CanChild and the researchers in the Netherlands was initiated by Gorter, who is also a visiting professor in Utrecht, Netherlands.

CanChild had previously established the Gross Motor Function Classification System (GMFCS) which identifies the spectrum of severity of cerebral palsy into five levels based on information about a child’s spontaneous movement such as rolling, sitting, crawling, standing and walking. The system is considered valid and reliable, and is used around the world.

The new developmental trajectories use those five levels, and find that although each person will be different depending on the severity of their injury, a description of their possible future abilities may be described.

Senior author Marjolijn Ketelaar, researcher at the Centre of Excellence for Rehabilitation Medicine at University Medical Centre Utrecht, said that it used to be that letting parents know about their child’s future ability to walk outdoors or wash and dress themselves were difficult to answer.

“We have systematically assessed their daily functioning in terms of mobility and self-care. This has resulted in the description of developmental trajectories for the various GMFCS levels,” she said.

Jeanine Voorman, pediatric rehabilitation physician at the UMC Utrecht and Wilhelmina Children’s Hospital, added: “It also enables better monitoring of the development of individual children with CP, setting realistic goals and providing targeted intervention activities, providing a customized treatment for the right child at the right time.”

The study was funded by the Canadian Institutes for Health Research and the Netherlands Organization for Health Research and Development.

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