How Patients with an Uncertain Diagnosis Experience Intolerance of Uncertainty: A Grounded Theory Study

PURPOSE: To develop a conceptual framework to explain how patients with uncertain diagnoses experience intolerance of uncertainty (IU) in order to achieve an in-depth understanding of the process of facing uncertainty in this population. PATIENTS AND METHODS: A grounded theory study using semi-structured interviews was conducted with 21 patients with uncertain diagnoses in China from December 2018 to March 2019. The coding process followed the procedures of Strauss and Corbin: open coding, axial coding, and selective coding. RESULTS: We developed a conceptual framework called ‘Facing an Uncertain Diagnosis’. This framework considers not only the external and internal context of IU generation but also the ongoing process of how IU impacts patients’ psychological status, cognitive response, behavior, and decision making. CONCLUSION: We suggest that healthcare professionals should be aware of the high level of IU and its psychological, cognitive, and behavioral manifestations in patients with uncertain diagnoses. Healthcare professionals should also be more cautious in shared decision making with patients with uncertain diagnoses.