The Elephant in the Room: Diagnostic Uncertainty in Pediatric Chronic Pain

Last modified by Paula Robeson on 2020/02/20 16:09

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 explains a pathological cause of their pain, a major challenge that youth and their parents face is uncertainty regarding diagnosis, prognosis, and treatment. Diagnostic uncertainty has been defined as the perception of a lack of or incorrect label to explain symptoms. For youth and their parents, diagnostic uncertainty may fuel beliefs that something more sinister is causing their pain that was missed by physicians and a continued search for the ‘right’ diagnosis. As such, diagnostic uncertainty has critical implications for pediatric chronic pain outcomes and treatment engagement. Diagnostic uncertainty is integrally tied to clinical encounters that youth and parents experience on their diagnostic journey, which is often brimming with negative test results and differing explanations. Many clinicians who treat pediatric chronic pain also experience diagnostic uncertainty, which is influenced by a variety of factors. This webinar will discuss qualitative research findings on the experience of diagnostic uncertainty from the perspectives of youth with chronic pain, their parents, and clinicians. The implications of diagnostic uncertainty will be discussed, as well as how this presents in the clinical encounter. This webinar will be of interest to front-line service providers, patient/family partners, and researchers.

Learning objectives:
  1. Gain an understanding of diagnostic uncertainty in the context of pediatric chronic pain
  2. Consider implications of diagnostic uncertainty for youth with chronic pain
  3. Consider ways clinicians might address diagnostic uncertainty in the clinical encounter  

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Alexandra Neville is a PhD student in the Clinical Psychology program at the University of Calgary, under the supervision of Dr. Noel. Her research is the first to explore the phenomenon of diagnostic uncertainty among youth with chronic pain, their families, and clinicians. As a researcher, Alex aims to improve treatment and health outcomes for medically vulnerable youth and their families and is committed to including the voices of patients and families in research. Alex is funded by an Alberta Innovates Graduate Studentship and a Canadian Institutes of Health Research Doctoral Award. She conducts her clinical research in the Alberta Children’s Pain Research Lab, located within the clinical milieu of the Vi Riddell Pain Rehabilitation Centre at the Alberta Children's Hospital.

Twitter Handle: @neville_alex 

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Dr. Tim Oberlander is a physician-scientist whose work bridges developmental neurosciences and community child health. He is a developmental pediatrician and works as the medical lead for the Complex Pain Service at BC Children’s Hospital. Since 1996, Dr. Oberlander has led a research program seeking to understand how early life experiences, related to in utero exposure to antidepressants and prenatal maternal mood, shapes stress reactivity, cognition and attention during childhood in ways that contribute to the early origins of self-regulation. His work provides strong evidence that both prenatal maternal mood disturbances and exposure to selective serotonin reuptake inhibitor (SSRI) antidepressants influence infant and childhood behavior, possibly via early changes in central serotonin signaling. Using a variety of approaches that include studies of genetic and metabolic stress-related factors and measures of cognition and neuroimaging (MRI), his work shows that the developing brain has a remarkable capacity for plasticity and recovery. Importantly, his works also demonstrates that mother’s mood matters in ways that contribute to developmental risk and resiliency. His work is driven by a curiosity and passion to know why, even in the face of adversity, some children do very well while others have more difficulty with learning, thinking, and behavior. The goal of his work is to understand how both mothers and children contribute to development and uncover why this happens.

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Created by Paula Robeson on 2020/01/27 21:01