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

priorities

Survey responses were combined with 112 unique research

priorities

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

1

What treatments or strategies effectively prevent acute pain from becoming chronic?

2

What is the impact of living with chronic pain on children’s and adolescents’ academic performance and educational attainment, and what strategies best support vocational planning?

3

What physical and psychological treatments are effective for improving pain and functional outcomes such as quality of life, depression, fatigue, sleep, acceptance, concentration, resilience, coping, self-management in children and adolescents with chronic pain?

4

What strategies improve access and delivery of evidence-based treatments, and coordination of care, for all Canadian children and adolescents with chronic pain, and their families, with a view to reduce disparities?

5

What strategies effectively increase healthcare providers training, knowledge, recognition, beliefs, attitudes, and communication about the validity and risk of chronic pain with children and adolescents, and its evidence-based treatments?

6

What strategies effectively increase government and healthcare organization financial support for evidence-based chronic pain care in Canada?

7

What strategies for educating school personnel about pediatric chronic pain effectively increase their awareness, understanding, and recognition of the validity, impact, and treatment of pediatric chronic pain?

8

What interventions are effective for managing acute pain flares in children and adolescents with chronic pain?

9

What is the interaction between chronic pain and mental health symptoms in children and adolescents, and when and how can co-occurring chronic pain and mental health symptoms be most effectively diagnosed and treated?

10

When are treatments for chronic pain in children and adolescents most effective 
(for example, after medical investigation is complete, or variation by type of treatment modality, or readiness of child/adolescent or family to engage in treatment)? 

Download and share a copy of our one-page (PDF)     Priority Setting Partnership and the Top 10 Priorities

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Patient & Parent Partnership in Research

Learning from Lived Experience with Pediatric Chronic Pain

Katherine

Youth living with chronic pain

“Being a patient partner has given me confidence by focusing on my abilities and the value I can bring. Being on a team of researchers and healthcare providers who understand my pain journey gives the sense of having a community behind you. We are all working towards the same goal and that is clear in the work that we are doing. I never thought I would have the opportunity to play such a crucial role in a research project.”

Justina

Youth living with chronic pain

“As a former pediatric patient, it has been incredibly empowering to be a part of the spark that has ignited patient engagement in chronic pain research in Canada. Living in the hospital just a few years ago, I would never have imagined that I would be a part of the decision-making table. I am grateful to be able to bring to light the disparities of chronic pain access in rural/remote regions of Canada and I am hopeful for the change to come. Being a patient advocate is part of who I am.”

Mary Anne

Mother of youth living with chronic pain

“Thank you so very much for the opportunity for my daughter and I to be part of such a powerful, impactful project. The experience was eye opening and so rewarding. Walking away afterwards, we realized what an impact our voice had to help shape the future direction of research on childhood chronic pain. Working through the day and arriving at the top 10 priority list brings to light just how important it is to have diversity at the table to reflect voices from a variety of healthcare workers, youth and their families." 

Carley

Youth living with chronic pain

“The sense of involvement and partnership from participating as a patient partner is empowering. I wanted to contribute because 1) we’re speaking on behalf of many people who experience the same thing, and 2) because it is a form of validation. It’s validation that what we experience on a daily basis is real and that healthcare professionals and researchers truly believe in what we are saying and what we are identifying as health priorities. I think it’s easy to say ‘I believe you and what you are telling me’ but it is the action of consciously including patients that speaks much louder in terms of believing patients and acting on the information they give."

Esther

Mother of youth living with chronic pain

“It is great to have the patients and families’ voices at the table because we have a different set of eyes from researchers. We come from a place where we’ve lived through and tried to overcome chronic pain. We’ve come from a place of isolation at times, where you don’t see other people in your community going through the same thing as your children. To know that there’s a possibility to share our information with the medical practitioners, I think we need more of these opportunities, Canada-wide”.​

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

Justina Marianayagam

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

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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.

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Read about the Partnering For Pain project in the Canadian Institutes of Health (CIHR) Institute of Musculoskeletal Health and Arthritis (IMHA) July 2019 newsletter!

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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.

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Pediatric Pain Letter

 

Published commentary on patient engagement in pediatric chronic pain research co-authored by patient partners and Partnering For Pain project lead. 

Project Team

Project Lead

 

Dr. Katie Birnie, PhD RPsych, Alberta Children’s Hospital

 

Project Co-Lead  

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

 

Project Funders

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Project Partners

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