Grant: Travel Awards - Institute Community Support

Chronic pain (pain lasting at least 3 months) impacts 1 in 5 youth, who experience worse well-being and quality of life, even into adulthood. Virtual care can help youth with chronic pain to access care. However, those who may already struggle to access the health system, such as people with low income or who have brain-based developmental disabilities (like autism), may have a harder time with virtual appointments. Additionally, youth and families do not always have a say in decisions about their care. Our team of researchers, health professionals, and people with lived experience of pediatric chronic pain is developing a decision aid: a tool that helps patients and health professionals decide on treatment together. We asked 15 patients (8 youth and 7 parents, including people of colour or who have neurodevelopmental disabilities) and 15 health professionals what they want from a decision aid for in-person versus virtual pediatric chronic pain care. Patients and health professionals completed a survey and an interview about their experiences and perspectives with virtual care. We then summarized the common themes across experiences of each group. Themes from health professionals suggest that the decision aid should: 1) consider individual patient needs; 2) help patients engage in care; 3) support health professionals' own needs and values; and 4) consider the decision-making context (like clinic resources and policies). In contrast, themes from patients guide the decision aid to: 1) communicate patient needs and preferences; 2) help them navigate their care; and 3) build partnership within a paternalistic health system. Our results show that patients and health professionals value different aspects of decision-making, which need to be considered in in-person versus virtual pain care. We will include these preferences in the decision aid prototype to support youth and parents in getting the best pain care and reduce the burden of chronic pain.