Dear CanChild,

Welcome to the September 22nd edition of CanChild Today! We are excited to share about the upcoming CP-NET conference, research round, research participation opportunities, recent news, a featured resource, and summaries of recent publications.

Please feel free to share CanChild newsletter & resources with family, friends and colleagues. 

They can subscribe to the CanChild Today! newsletter for free by registering here. 

Our past issues are archived on the CanChild website and can be accessed here.

Do you have 5-10 minutes to spare? The CanChild website (www.canchild.ca) will be undergoing a re-design this fall. We are seeking your feedback so that we can improve our website to better meet your needs. This quality improvement survey is completely anonymous and will greatly help our website design team.

Have you registered yet? Discover, connect, and celebrate with families, researchers, healthcare providers, and policymakers on World Cerebral Palsy Day. Don’t miss this opportunity to learn about the latest Cerebral Palsy research and community resources!

The Measure of Processes of Care (MPOC) is a survey of parents’ perceptions assessing the extent of how they feel health services they and their child(ren) receive are family-centred. Consider joining us to see what we have learned so far. All are welcome!

We are looking for Canadian youth (ages 16-24) with special healthcare needs (diagnosed with a disability or chronic physical/mental health condition) to participate in an online interview about healthcare transition from pediatric to adult services during COVID-19. Contact Barb Galuppi galuppi@mcmaster.ca to participate in this research study. Click here to learn more.

Do you have a child or adolescent with Cerebral Palsy between 2 to 18 years old? Would you like to participate in a measurement study to test a new instrument called Gross Motor Function Family Report? If you are interested or have any questions, please email chagasp@mcmaster.ca.

CanChild members traveled to Vancouver, BC to attend the Developmental Origins of Health and Disease (DOHaD) World Congress which was held in partnership with Kids Brain Health Network. Representing a variety of projects from ENVISAGE to the Family Engagement in Research (FER) Course, our team left a positive impression.

Congratulations to Vanessa Tomas (FER Grad and co-instructor; CanChild Research Coordinator) who received a Trainee Poster Award and to Alice Soper (FER Research Assistant; CanChild Research Coordinator) who received the President's Plenary Award for a presentation on the FER Course pilot evaluation at DOHaD World Congress.

Peter Cahill, a Rehabilitation Science PhD student supervised by Dr. Wenonah Campbell, has been selected as a Doctoral Fellow for the first cohort of trainees in the new National Research Training Platform in Neurodevelopmental Disabilities. As part of the Fellowship, Peter will partake in numerous networking and skill enrichment activities throughout the tenure of the award. He will be collaborating and learning with other emerging childhood disability researchers in Ontario, Québec, and Alberta.

CanChild Scientist Dr. Wenonah Campbell was recently featured in McMaster University's Faculty Affairs, which showcase the talents and expertise of members within the Faculty of Health Sciences!

CanChild's Concussion Management brochures are fabulous resources for parents, physicians and community agencies. This informative, evidence-based, pediatric-specific brochure provides facts about concussions, including symptoms and a clear plan for return to school with stage-by-stage guidelines for children and youth experiencing varying degrees of symptom status. The brochures highlight that a concussion is a brain injury that changes the way the brain functions and must be taken seriously!

Cerebral palsy and developmental intellectual disability in children younger than 5 years: Findings from the GBD-WHO Rehabilitation Database 2019.

The authors set out to report the best available evidence on the global and regional prevalence of cerebral palsy (CP) and developmental intellectual disability and the associated “years lived with disability” (YLDs) among children under 5 years of age in 2019. They accomplished this by analyzing the collaborative 2019 Rehabilitation Database of the Global Burden of Disease (GBD) Study and World Health Organization for neurological and mental disorders available for 204 countries and territories. The results? Globally, 8.1 million or 1.2% of children under 5 years are estimated to have CP with 16.1 million or 2.4% having intellectual disability. Over 98% resided in low-income and middle-income countries. CP and intellectual disability accounted for 6.5% and 4.5% of the aggregate YLDs from all causes of adverse health outcomes, respectively. African Region recorded the highest prevalence of CP while South-East Asia Region had the highest prevalence of intellectual disability. The top 10 countries accounted for 57.2% of the global prevalence of CP and 62.0% of the global prevalence of intellectual disability. 

Authors: Olusanya, B. O., Gladstone, M., Wright, S. M., Hadders-Algra, M., Boo, N.-Y., Nair, M. K. C., Almasri, N., Kancherla, V., Samms-Vaughan, M. E., Kakooza-Mwesige, A., Smythe, T., del Castillo-Hegyi, C., Halpern, R., de Camargo, O. K., Arabloo, J., Eftekhari, A., Shaheen, A., Gulati, S., Williams, A. N., … Davis, A. C. (2022). Frontiers in Public Health, 10, 894546. doi: 10.3389/fpubh.2022.894546

Capturing Meaningful Outcomes in Pediatric Neurology: Further Reflections on Principles, Challenges, and Opportunities.

Patient and public involvement in health care is considered indispensable in the way we conduct daily pediatric neurology practice, and in the development and utilization of health outcome measurements. Recent developments have transformed our attitude on how to help children with neurological and developmental conditions and their families: specifically, (1) the recognition of the fundamental rights of children with disabilities; (2) the application of the framework of the International Classification of Functioning, Disability and Health by the World Health Organization that views health from the perspective of both biopsychosocial strengths and functional abilities; (3) the application of qualitative research methodologies to children with neurological conditions and their caregivers to elucidate what they consider essential for their own good health and well-being; and (4) the development of core outcome measurements sets for children and adults with various neurological and developmental conditions. In summary, supporting patients in their role as full partners in clinical care and research enables them to contribute their experiential knowledge and helps ensure that results are relevant and address patient needs, preferences, and priorities.

Authors: Ronen, G. M. (2022). Pediatric Neurology,135, 38–43. doi: 10.1016/j.pediatrneurol.2022.07.012