Grant: Catalyst Grant: Digital Health - Early to Mid-Career Research

Due to advances in the treatment of chronic illness in youth, the survival rates for these illnesses have improved significantly over the past 50 years. Pain is one of the most common and distressing symptoms experienced by youth with a chronic illness (e.g., juvenile idiopathic arthritis. sickle cell disease). However, pain is consistently overlooked and undertreated among youth who have a chronic illness. Poorly managed pain has short- and long-term consequences - especially for teenagers. For example, when teens' pain is undertreated, it often continues as they get older and has negative effects on their mental health and social relationships in adulthood. It is therefore vital that teens with a chronic illness receive proper pain treatment. A key challenge that teens with a chronic illness often face is communicating their pain with other people in their lives, including health care providers. Good pain communication is critical to improving teens' pain and reducing the impact that it has on their lives. Despite this, no treatments or tools have been developed to help teens better communicate their pain with healthcare providers. In addition, making such a tool digital would increase the number of teens that could use it and benefit from it. In this study, we will learn what teens with chronic illnesses, their parents, and health care providers need and want when talking about teens' pain. This input will help us create a digital tool to improve pain communication between teens and their health care providers. Once we create a first version of the tool, we will keep working with teens who have chronic illnesses and chronic pain to improve the tool. Once the tool is complete, we will test how helpful it is in a future study. If we find that this tool is helpful, it has the potential to improve the pain, wellbeing, and lives of teens living with a chronic illness and chronic pain.