Navigating Uncertainty: Patient Experiences of BIRADS 0 Mammogram Results

Objective: Describe experiences of patients receiving BIRADS 0 (inconclusive) mammogram results in electronic health portals. Methods: Recruited eighteen patients who had received BIRADS 0 results via the portal in the last 5 years.Semi-structured interviews yielded qualitative data, analyzed sequentially using the immersion crystallization method to identify content and then iterative coding both individually and in groups. A team of 4 researchers coded and analyzed the transcripts, using repeated meetings and a shared spreadsheet to organize codes and develop thematic elements via visual organization. Results: Themes included baseline comfort/trust with healthcare and how it interacted with anxiety about the uncertainty of the results. Searching online for logistical and reassuring information was common, which was also impacted by anxiety and distress. Participants who expressed baseline trust were more likely to use online searches and outreach to reassure them, while those with pre-existing mistrust in healthcare were often made more anxious by looking for information. Conclusions: Patients with BIRADS 0 results handle uncertainty in ways which interact with their trust or mistrust in healthcare, including reaching out to friends and using the internet. There is a need for reliable, on-demand information regarding these results which is accessible via online health portals.