Choosing the right model of care together: Shared decision making to improve equitable implementation of in-person vs virtual care for youth with chronic pain and their families

Chronic pain (pain lasting months to years) affects one in five youth in Canada. This pain can last into adulthood and negatively impacts an individual's mental health, their well-being, and their ability to earn a living. The COVID-19 pandemic is making chronic pain worse because it is harder for youth and their families to access healthcare. As a result, medical appointments now mostly happen by telephone or video (called virtual care) instead of in person. This helps a lot of people, but makes it harder for others who already struggle to access chronic pain care, such as youth who identify as Black or of colour or have brain-based developmental disabilities (like Autism or Cerebral Palsy). We want to make sure that all youth with pain and their families have a say in whether they receive their pain care in person or virtually. We will do this by creating a tool called a decision aid that makes it easier for youth, their parents, and healthcare professionals to decide together whether in-person or virtual care is best. Our project will complete four related activities to create this decision aid. We will: (1) review what we already know about which treatments for chronic pain are most helpful in person or virtually; (2) survey clinics for youth with chronic pain in Canada and around the world about how they are making this decision right now, (3) ask diverse youth with chronic pain, parents, healthcare professionals, and administrators about what information they want included in the decision aid; and (4) create the decision aid with our team of youth, parents, healthcare professionals, and administrators and make sure that they think it is acceptable. The decision aid we create together will make sure that diverse youth, their families, and healthcare professionals have a positive experience of care for chronic pain, make sure that youth get the best pain care they need, and reduce unnecessary costs for families and the health system.