Clinician Communication About Uncertainty During Parkinson Disease Diagnostic Consultations

Parkinson disease (PD) entails much uncertainty, regarding diagnosis, disease course, and treatment. How clinicians communicate about such uncertainty may affect patients' understanding of the information and their well-being. However, clinicians rarely receive formal training in how to optimally discuss uncertainty during diagnostic consultations. We assessed (1) how clinicians communicate about uncertainty, (2) how their communication about uncertainty predicts patients' feelings of uncertainty and trust, and (3) the moderating effect of clinicians' and patients' tolerance for uncertainty.

We recorded diagnostic consultations regarding PD (initial and follow-up within 6 weeks) for 50 patients. The frequencies of clinicians' verbal expressions of uncertainty were systematically coded for topic, initiative, explicitness, and communication approach. Moreover, clinicians' reactions on patients' and companions' uncertainty expressions were coded. Patients and clinicians completed multiple surveys assessing background characteristics, uncertainty tolerance, feelings of uncertainty, and trust. We conducted descriptive analyses and fitted mixed linear models.

Clinicians expressed uncertainty on average 20 times over both diagnostic consultations combined (range 6-67; 0.40 p/min). Most statements concerned medication (31%) and diagnosis (30%), and uncertainty was predominately conveyed implicitly (mean = 74%). The most frequently observed communication approach (30%) was outlining a plan to obtain more certainty. Patients or companions expressed uncertainty on average 12 times (range 1-29; 0.20 p/min), to which clinicians most often responded by providing more information (67%). Patients' feelings of uncertainty decreased after the diagnostic consultation(s). Clinicians' uncertainty tolerance was not associated with their uncertainty communication. Neither patients' nor clinicians' uncertainty tolerance moderated the association between uncertainty communication and patient-reported outcomes.

Uncertainty is integral to PD diagnostic consultations and does not seem to have harmful effects on patient well-being. Its discussion often remains implicit and is strongly focused on justifying or reducing the uncertainty. More systematic research could assess the effects of various ways to convey uncertainty on patients' well-being and trust.