Children with chronic pain and their families are experts on what it’s like to live with pain lasting months to years, but until now, research has not asked what issues they care about most.
Approximately 1 to 3 million Canadian children and teens live with chronic pain
Our national Partnering For Pain team has engaged hundreds of Canadian youth, families, and pediatric chronic pain healthcare provider in a rigorous James Lind Alliance Priority Setting Partnership to identify the top priorities in pediatric chronic pain research and care.
National survey with
215 Canadians who shared 540 potential priorities, questions or concerns
Final in-person workshop with
20 Canadians who reached consensus on the final Top 10 list
Interim survey with
57 Canadians who
rated the importance
of the research
Survey responses were combined with 112 unique research
We engaged individuals with lived experience with chronic pain during childhood (youth and adults), family members, and healthcare providers across 4 priority setting stages.
The final identified priorities are a call to action to ensure that future research in pediatric chronic pain focuses on what is most important to people who will use it in their everyday lives.
Top 10 patient-oriented research priorities in pediatric chronic pain
Download and share a copy of our one-page (PDF) Priority Setting Partnership and the Top 10 Priorities
Patient & Parent Partnership in Research
Learning from Lived Experience with Pediatric Chronic Pain
This amazing and diverse group of youth living with chronic pain, parents, siblings, and healthcare providers came together from coast to coast to coast to identify the Top 10 priorities to improve chronic pain care for kids and teens in Canada.
It’s critical we partner together to make that change happen.
- Dr. Katie Birnie
Meet a Patient Partner
I have been living with chronic pain since I was 16 years-old. I live with pain every day because I have a rheumatological condition.
When I got my diagnosis, my whole life turned upside down. I went from being a normal teenager worrying about graduating high school, to worrying how to deal with my pain. I was spending weeks on end at hospitals and so I missed a lot of school and I missed my friends.
Luckily, I had an incredible medical team and a very supportive school. In grade 11 I was introduced to in-hospital teachers at SickKids. They helped me work on my English course at my own pace. Once I went back, my school organized a meeting with my parents and all my teachers so we could come up with a plan. It was great because no one asked me to share the details of my conditions. It helped me maintain my privacy. We came up with a plan that worked for me. I could take exams in separate rooms. They gave me extra time for breaks and I could bring my medications. My teachers were creative and they came up with new ways to test me as I had to miss a lot of class. I started taking online courses and went to summer school so I could get all my university prerequisites.
I am so grateful that my school listened to my unique needs. I am grateful they were willing to come up with a plan that worked for me. Without their support I would not have been able to walk across the graduation stage with my classmates. I would not have had the confidence to go to university and I would not be in medical school today, all while living with chronic pain.
Partnering for Pain - Our Impact
Partnering For Pain: A Priority Setting Partnership to identify patient-oriented research priorities for pediatric chronic pain in Canada
Read our open access article about the Partnering for Pain Priority Setting Partnership in the Canadian Medical Association Journal
Canadian Pain Task Force
We urgently need a National Pain Strategy embraced by policymakers, health professionals, and patients to provide effective pain management services for all Canadians who need them.
Read about the Partnering For Pain project in the Canadian Institutes of Health (CIHR) Institute of Musculoskeletal Health and Arthritis (IMHA) July 2019 newsletter!
Children’s Healthcare Canada
Blog post on promoting patient partnership in child health research
Presentation at the Canadian Academy of Health Sciences to inform a national strategy for chronic pain.
Pediatric Pain Letter
Published commentary on patient engagement in pediatric chronic pain research co-authored by patient partners and Partnering For Pain project lead.
Dr. Katie Birnie, PhD RPsych, Alberta Children’s Hospital
Dr. Jennifer Stinson, PhD, The Hospital for Sick Children
Project Collaborators & Partners
Researchers and Healthcare Providers
Krista Baerg, MD, University of Saskatchewan
Fiona Campbell, MD, The Hospital for Sick Children
Jill Chorney, PhD, IWK Health Centre and Dalhousie University
Paula Forgeron, PhD, University of Ottawa
Christine Lamontagne, MDMC, Children’s Hospital of Eastern Ontario and University of Ottawa
Melanie Noel, PhD, University of Calgary
Patricia Poulin, PhD, University of Ottawa
Patient and Parent Partners
Katherine Dib, Halifax, Nova Scotia
Mary Anne Dib, Halifax, Nova Scotia
Esther Fleurimond, Gatineau, Quebec
Isabel Jordan, Squamish, British Columbia
Justina Marianayagam, BHSc, Yellowknife, Northwest Territories
Kimberly Nelson, Windsor, Ontario
Carley Ouellette, BScN, Hamilton, Ontario
Dallyne Pahtayken, Onion Lake, Saskatchewan
Dolores Pahtayken, Onion Lake, Saskatchewan
Adam Val Bonzil, Gatineau, Quebec
Government and Policy Partners
Julie Drury, Ottawa, Ontario
Garry Salisbury, MD, (formerly) Ontario Ministry of Health and Long Term Care