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Abstract Purpose: Incorporating patient-reported outcomes (PROs) into survivorship care may improve the comprehensiveness of follow-up. The objective was to engage stakeholders to develop a PRO assessment of survivors’ symptoms and concerns for use during breast cancer follow-up. Methods: We convened patient and oncologist stakeholder advisory groups to define a low-risk survivor cohort; develop an initial PRO assessment including survivorship domains of importance, measurement instruments, and clinically significant thresholds; and revise the assessment based on feedback from community focus groups and two rounds of iterative pilot testing with survivors. Results: The most commonly cited “low-risk” criteria was cancer stage. Stakeholders identified key domains and measurement instruments, including recurrence symptoms, treatment side-effects, adherence, mental health, and sexual health. Ninety-four survivors completed the PRO assessment in the initial pilot test (median age 62 years, median 2 years from diagnosis). Most (89/93) reported questions were easy to understand. The level of missingness was low. The most common threshold-level symptoms/concerns were hot flashes (46%), fatigue (35%), back pain (31%), joint pain (31%), and anxiety (30%). The PRO assessment was revised to clarify symptom causality and desire to discuss with a provider. In a follow-up pilot study with twenty survivors, the most common symptoms were chest/breast discomfort (50%) and anxiety (25%). Conclusions: We leveraged stakeholder input to develop a comprehensive PRO assessment to use to assess breast cancer survivors’ well-being. Our PRO assessment is acceptable to survivors. Future research will focus on the integration of the PRO assessment into clinical care.
Neuman et al. (Fri,) studied this question.