How the Clinical Encounter Shapes Diagnostic Uncertainty in Pediatric Chronic Pain

Approximately one third of youth with chronic primary pain receiving care in a tertiary care pediatric pain setting, and their parents, report diagnostic uncertainty, which is associated with poorer child pain outcomes and is intricately tied to clinical communication along the pain care journey. This study utilized archived data (collected 2003-2006) to explore components of the clinical encounter that influence diagnostic uncertainty among youth with chronic pain and their parents. Twenty-three youth with chronic primary pain and at least one of their parents who presented for an initial visit at a tertiary pediatric pain clinic participated. Initial clinic intake visits were audio and video recorded, and youth and parents participated in semi-structured interviews prior to, and several months following, their intake appointment. Transcripts of clinical encounters and pre- and post-interviews were analyzed using interpretative phenomenological analysis. Analyses generated four themes: 1) Diagnostic uncertainty is a social phenomenon critically shaped in clinical encounters; 2) (In)validation of pain, the journey, and diagnostic uncertainty; 3) The (missing) link between origin story & pain explanation; and 4) The fragility of certainty. These themes illustrate that youth’s and parents’ experiences of diagnostic uncertainty are complex, dynamic, and shaped within clinical encounters. The actions taken and explanations provided by clinicians in the clinical encounter can heighten or lower diagnostic uncertainty. Clinician communication, including (in)validation, messages of (un)certainty, elicitation of youth’s and parents’ pain origin stories and their connection to a pain explanation, influence diagnostic uncertainty and could be targets for assessment, training, and intervention.