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Improving the Assessment of Pain in Children with Brain-based Developmental Disabilities

Pain is a very personal experience. It’s often invisible, making it hard for others to know how much pain someone is experiencing. This is particularly true for children who cannot verbally communicate.

We are conducting a systematic review of the scientific literature to identify and evaluate the quality of existing measures for assessing pain in children with brain-based developmental disabilities (such as autism spectrum disorder, cerebral palsy, developmental delay, attention deficit hyperactivity disorder, fetal alcohol spectrum disorder, severe intellectual or learning disabilities).   

This information will be used to:  

The COSMIN (COnsensus-based Standards for the selection of health Measurement INstrumentswill be used as an established framework for evaluating measurement properties of identified pain assessment measures.  

The findings from this review will identify outcomes and measures that will be used by researchers, health professionalsin clinical registries, and by patients and families to support evidence-based pain assessment for children with brain-based developmental disabilities.

20190929 Katie Birnie_Cropped

Project Lead

Katie Birnie, PhD RPsych
University of Calgary
Project Co-Lead Tim Oberlander headshot

Project Co-Lead

Tim Oberlander, MD
University of British Columbia

Researchers & Health Professionals

Katelynn Boerner, PhD
University of British Columbia

Tammie Dewan, MD
University of Calgary

Meghan McMurtry, PhD
University of Guelph

Lara Genik, PhD
University of Guelph

Carly McMorris, PhD
University of Calgary

Kailyn Turner, PhD
University of Calgary

Diane Lorenzetti, PhD
University of Calgary

Patient Partners

Dacey Doyle
Edmonton, Alberta

Chantelle Bouck

Stacy Grainger-Schatz

Project Funders


Project Partners

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