Project 454873

Chronic pain affects one in five youth and is associated with high societal and economic costs. As many youth with chronic pain do not receive a diagnosis that precisely explains a pathological cause for their pain, a major challenge that youth and their parents face is uncertainty regarding their diagnosis, prognosis, and treatment. Diagnostic uncertainty is the perception that a label or explanation for an individual's health problem is missing or inaccurate. Our recent research shows that 30-50% of youth with chronic pain and their parents experience diagnostic uncertainty, believing that there is something more sinister causing their pain that was missed by physicians. This is understandable given that chronic pain is complex, difficult to explain and treat, and children often receive differing explanations for their pain along their diagnostic journey. Youth's and parents' beliefs about the cause of their pain matters and has critical implications for children's pain experiences. Our interviews with youth, parents, and physicians revealed that diagnostic uncertainty is connected to medical encounters that youth and parents experience on their diagnostic journey. However, we do not yet know how diagnostic uncertainty may change over time or influence youth's engagement in and response to pain treatment. The current study will directly address this by following a cohort of youth during and one year after engagement in multimodal pain treatment. In-depth qualitative interviews will also deepen our understanding of the lived experience of youth seeking chronic pain care and their parents. Understanding diagnostic uncertainty as it relates to the course of pediatric chronic pain treatment is a critical next step in improving care for these vulnerable youth.