Development of the Breast Cancer Survivors Symptom Checklist for Use in Follow-Up Multidisciplinary Appointments

BACKGROUND: Breast cancer survivors are primarily followed up to monitor the effectiveness of treatment and complications and to detect recurrences. Many breast cancer survivors may experience prolonged adverse physical and psychological effects, which should also be addressed at follow-ups. The objective of this study was to develop a brief symptom assessment tool for breast cancer survivors to be used as a guideline for the survivors and all health care professionals conducting the routine follow-up. The second objective was to describe the women’s individual experiences with follow-ups. METHODS: A literature review, a focus group of 6 healthcare professionals using a nominal group technique process, and the experience and feedback via qualitative interviews with 16 breast cancer survivors was used to develop the Breast Cancer Survivors Symptom Assessment Checklist (BCS-SC). RESULTS: The BCS-SC consists of a set of 13 symptoms/burdens and one question. On a scale from 0 (no symptom) to 10 (worst imaginable), survivors indicated the extent to which they experience each symptom. All survivors perceived the annual follow-ups as important, but none prepared for them. Eight of the 16 survivors reported that they had 2 or more of the symptoms/burdens listed in the BCS-SC. However, only one of the survivors had mentioned her symptom to the doctor at follow-up. CONCLUSION: The BCS-SC is a comprehensive assessment tool for symptoms/burdens that are common among breast cancer survivors and can aid efforts to optimize their follow-up. Furthermore, the BCS-SC allows for a more patient-initiated and focused consultation, leading to more patient-centered quality care.