Using Qualitative Methods to Capture Experiences of Breast Cancer Patients and Characterize Knowledge Types and Levels: The First Step in Informing Patient Knowledge Sharing

PROJECT SUMMARY Gaps and misconceptions in patient knowledge can contribute to poor care adherence, decreased quality of life, and even negative outcomes, especially in underserved populations. There is an urgent need to systematically capture, characterize, and develop mechanisms for breast cancer patient knowledge sharing. The objective of the proposed feasibility and acceptability pilot study is to capture lived experiences of breast cancer patients and characterize their knowledge types, levels, and gaps longitudinally. Topics include comprehension of illness (type, stage, prognosis), treatment decision making, navigating emergent events resulting in deviations from treatment trajectory (e.g. hospitalization for neutropenic fever). In a collaboration between human factors researcher, medical oncologist, and a patient partner, we will conduct semi-structured Cognitive Task Analysis interviews to elicit breast cancer patient experiences longitudinally (prior to first treatment, 6 months and 1 year after diagnosis). We recruit ~35 adult breast cancer patients. We will analyze interview data using thematic analysis and develop taxonomy of patient knowledge across the care continuum. The expected impact is: 1) understanding patient knowledge and gaps as a function of time/experience and 2) gaining insight into designing human-centered and culturally sensitive patient education.