Diagnostic uncertainty in pediatric chronic pain: nature, prevalence, and consequences

INTRODUCTION: Diagnostic uncertainty (DU), which is the perception that a label or explanation for a patient's health problem is missing or inaccurate, has been linked to distress, anxiety, and difficulty coping among adults with pain. This study examined the prevalence of DU among youth with chronic pain and their parents and the relation of parent and youth DU with youth pain, pain-related constructs, and health-related quality of life (HRQoL). METHODS: Participants included 174 youth with chronic pain (M(age) = 14.28 years; 73% female) and one of their parents (91% mothers) recruited from a tertiary-level pediatric chronic pain program in Canada. Youth and parent DU was assessed using a brief measure of 3 empirically derived yes/no questions regarding whether the youth and parent had received a clear diagnosis/explanation for their/their child's pain and whether they believed there was something else happening with their/their child's pain that doctors had not yet found. Youth reported on their pain intensity, pain interference, pain catastrophizing, fear of pain, and HRQoL. RESULTS: Thirty-one percent of youth and 28% of parents experienced DU. Seventy percent of parents and youth were in agreement regarding their experience of DU. Youth DU was linked to higher youth catastrophic thinking about their pain. Parent DU was linked to greater youth pain interference and intensity and lower youth HRQoL. CONCLUSION: Diagnostic uncertainty is experienced by nearly a third of youth with chronic pain and their parents and is linked to worse youth pain, pain catastrophizing, and HRQoL.