Approximately 1 to 3 million Canadian children and teens live with chronic pain.

 

Children with chronic pain and their families are experts on what it’s like to live with pain, but until now, research has not asked what issues they care about most.

 

Over the past year, our national Partnering For Pain team has engaged hundreds of Canadian youth, families, and pediatric chronic pain clinicians in a rigorous James Lind Alliance partnership process to identify the top research priorities in pediatric chronic pain.

We engaged individuals with lived experience with chronic pain during childhood (youth and adults), family members, and treating healthcare providers across three priority setting stages:

(a) national survey with 215 Canadians who identified 540 potential priorities;

(b) interim survey with 57 individuals who rated the importance of the priorities; and

(c) final in-person workshop with 20 individuals who reached consensus on the final Top 10 list.

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 in children and adolescents?

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 for children and adolescents with chronic pain?

3.

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

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 governmental and healthcare organizational financial support for evidence-based pediatric 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)?

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“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.”

Youth living with chronic pain

Katherine

“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.”

Youth living with chronic pain

Justina

“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." 

Mother of youth living with chronic pain

Mary Anne

“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."

Youth living with chronic pain

Carley

“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”.​

Mother of youth living with chronic pain

Esther

“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

PARTNERING FOR PAIN IMPACT

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."

Partnering For Pain Priority #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 for children and adolescents with chronic pain?

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.

 

I am grateful, but I know lots of kids living with chronic pain struggle to get to school, graduate, and pursue their dreams.

Project Team

Project Lead: Dr. Katie Birnie, PhD RPsych

Project Co-Lead: Dr. Jennifer Stinson, PhD, The Hospital for Sick Children

Project Collaborators and Partners:

 

Researchers and Healthcare Providers

 

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 

  • Dr. Garry Salisbury, (formerly) Ontario Ministry of Health and Long Term Care

 

Project Funders

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Project Partners

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Partnering For Pain: A priority setting partnership to establish patient-oriented research priorities in pediatric chronic pain

 

By Dr. Kathryn Birnie, PhD RPsych, Psychologist and Lead for the #PartneringForPain project

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Children’s Healthcare Canada – Promoting patient partnership in child health research

Do you have unanswered questions about treating chronic pain in children and teens?

WATCH 

Presentation at the Canadian Academy of Health Sciences to inform a national strategy for chronic pain.

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PEDIATRIC PAIN LETTER

Presentation at the Canadian Academy of Health Sciences to inform a national strategy for chronic pain.