Project Description
Challenge
Doctors should ideally diagnose cerebral palsy (CP) before a baby’s first birthday, according to international guidelines. This way, the child can access early interventions that will help them reach their fullest potential for movement and function. However, the average age for a CP diagnosis in Canada is 18.9 months, and treatment doesn’t always follow quickly afterwards.
Project Summary
By moving scientific evidence into practice, Kids Brain Health Network researchers are empowering clinicians to detect cerebral palsy early and then quickly connect children to early interventions. The team will implement CP early-detection tools in neonatal follow-up programs—which monitor infants who are at high risk of developmental conditions—and with family doctors, who see low-risk babies. The researchers will also be building capacity for early-intervention programming with a focus on Baby Constraint Induced Movement Therapy (CIMT), a treatment that is often helpful for a common kind of CP.
Using a Knowledge to Action framework, a structured approach to making change, the early detection tool known as the Hammersmith Infant Neurological Examination (HINE) will be implemented into neonatal follow-up programs in each province across Canada. For infants who come through family doctor’s offices, the investigators arranged to add crucial information related to signs of CP to the Rourke Baby Record, a guide that many physicians use at routine baby checkups. Both of these changes will trigger referrals to early interventions such as Baby CIMT programming.
To sustain change in practice, the team developed the Early Detection and Intervention Toolkit for CP (EDIT-CP), which contains these early-detection resources along with tools for high-risk and low-risk populations. It also contains a resource that summarizes the evidence and answers frequently asked questions for each type of intervention. Occupational therapists and parents are currently providing helpful feedback about its usability.
Looking Towards the Future
The investigators now aim to implement the HINE early detection tool in neonatal follow-up programs, to build capacity for providing Baby-CIMT, and to nationally disseminate EDIT-CP. They will proceed to assess the difference these steps make for healthcare providers and families. For their part, families will be able to enhance their child’s development because of earlier detection and timelier access to early interventions.
Download the EDIT-CP flyer here.
Funding
Kids Brain Health Network – $395,250.00
Team
Principal Investigators
Dr. Darcy Fehlings, Holland Bloorview Kids Rehabilitation Hospital
Dr. Annette Majnemer, McGill University; Research Institute – McGill University Health Centre
Dr. Tatiana Ogourtsova, McGill University
Co-Investigators
Dr. Amber Makino, Holland Bloorview Kids Rehabilitation Hospital
Dr. Rudaina Banihani, Sunnybrook Health Sciences Centre
Dr. Karen Thomas, McMaster Children’s Hospital
Dr. Zachary Boychuck, McGill University
Dr. Benjamin Burko, Pediatric Tiny Tots – Elna Medical Center
Partners
Janeway Children’s Health & Rehabilitation Centre
IWK Health Centre Neonatal Follow-Up Clinic
IWK Health Centre Pediatric Rehabilitation Clinic
Jewish Rehabilitation Hospital (CISSS Laval)
Montreal Children’s Hospital – McGill University Health Centre
Holland Bloorview Kids Rehabilitation Hospital
Specialized Services for Children and Youth (SSCY) at Rehabilitation Centre for Children
Saskatchewan Health Authority
Alberta Children’s Hospital
Glenrose Rehabilitation Hospital CP Clinics (Alberta)
BC Children’s Hospital: Neonatal Follow up Clinic
Sunny Hill Health Centre CP Clinic (British Columbia)
The Centre for Child Development
Queen Alexandra Centre for Children’s Health
Previous Initiatives
Implementation Readiness Fund – Finding a Way to Diagnose Cerebral Palsy Sooner
