Clinician and Patient Perspectives on a Patient-Facing Online Breast Cancer Symptom Visualization Tool.

Abstract

Purpose: Endocrine treatments for patients with hormone-sensitive breast cancer are associated with significant side effects that can negatively affect health-related quality of life and result in treatment discontinuation. The objective of this qualitative study was to obtain feedback from stakeholder clinicians and patients about an online interactive tool that was designed to provide information and visualizations of breast cancer symptoms.

Methods: The online Breast Cancer Symptom Explorer tool was developed to allow patients to visualize trajectories for common symptoms associated with tamoxifen and anastrozole using symptom data from the NSABP B35 breast cancer clinical trial. To refine the tool, virtual focus groups were conducted among oncology clinicians and women with a history of breast cancer who had received treatment with an aromatase inhibitor or tamoxifen, seeking feedback on the tool and its potential usefulness. Discussions took place using a secure web-conferencing platform following a semi-structured interview guide. Focus groups were audio-recorded, transcribed, and analyzed using reflexive thematic analysis.

Results: Nine focus groups were conducted (n = 21 participants: eight clinicians and 13 patients). Key benefits and barriers to tool use emerged from the discussions. Both patients and oncologists valued the ability to engage with the tool and visualize symptoms over time. They indicated that ideal settings for its use would be at home before treatment initiation. Combinations of graphical representations with text were perceived to be most effective in communicating symptoms. Key barriers identified included concerns about accessibility to the tool and digital literacy, with recommendations to simplify the text and provide health literacy support to enhance its clinical utility in the future.

Conclusion: Clinician and patient involvement was critical for refinement of the breast cancer symptom explorer and provided insights into its future use and evaluation of the tool in clinical decision making.