Reference frame and emotions may contribute to discrepancies in patient and clinician risk estimates in Long QT syndrome

Abstract

ObjectivePatients and clinicians need to have similar understandings of cardiac risk, so patients can make informed decisions. The aim of this study was to assess the concordance of risk estimates between Long-QT-Syndrome (LQTS) patients and an experienced clinician. MethodsThis cross-sectional study included 86 LQTS patients recruited from a clinical registry. Participants completed two questions on their risk of cardiac arrest; likelihood (1=very-unlikely to 5=very-likely), and chance (%), and an experienced clinician computed the same based on risk factors. Results30% and 55% of patients had concordant perceptions with the clinician estimate on the chance and likelihood questions respectively. The patients who overestimated their risk (%) had significantly greater emotional responses and concerns about their LQTS. 22 (29%) patients reported a risk of 50% or greater, in contrast to the clinician’s risk estimates not exceeding 30%. ConclusionMany LQTS patients had discordant risk perceptions to the clinician’s. Patients and clinicians may have different frames of reference, and patients’ estimates are linked with emotions. Practical implicationsClinicians need to take into account LQTS patients’ different frame of reference when discussing risk information. This will support shared decision making.