Purpose: To test accuracy of patient self-report of breast cancer recurrence for enhancing standard population-based cancer registries that do not routinely collect cancer recurrence data despite the importance of this outcome. Methods: Potential research subjects were identified in the Breast Cancer Research Database (BCRD) of the Swedish Cancer Institute (SCI). The BCRD has collected data within 45 days of each medical encounter on new primary breast cancer patients receiving all or part of their initial care at SCI. Females diagnosed with a new primary breast cancer 2004–2016, Stages I–III, and alive at the time of study initiation (2018) were identified. Recurrent breast cancer patients were matched 1:1 to surviving non-recurrent patients by patient age, date of diagnosis, and single or multiple primary tumors. Consented research subjects were surveyed about their initial and subsequent diagnostic, therapeutic, and recurrent events. PRO survey responses were compared with BCRD information for each individual participant. Discrepancies were reviewed in medical records. Results: A matched sample of 88 recurrent and 88 non-recurrent patients were used in analyses. Respondents correctly identified the date of diagnosis of first primary breast cancer within 1 year 94% (165/176). Recurrence was reported by 97% (85/88) of recurrent patients. No recurrence was reported by 100% (88/88) of non-recurrent patients. Recurrence date within 1 year was correctly identified in 79% (67/85). Recurrence site was correctly identified in 82% (70/85). Medical record review of survey-registry discrepancies led to BCRD corrections in 4.5% (8/176) of cases. Implications for Cancer Survivors: Breast cancer patients can accurately report their disease characteristics, treatments, and recurrence history. Patient-reported information would enhance cancer registry data.
|Number of pages||9|
|Journal||Journal of Cancer Survivorship|
|State||Published - Apr 2022|
Bibliographical noteFunding Information:
The authors wish to thank for advice and support in the PRO survey development: Kathleen Malone Ph.D., Head of the Program in Epidemiology at FHCRC, Professor of Epidemiology at University of Washington (expertise in PRO surveys in breast cancer patients/survivors); Caleb Stowell M.D., Director Value Based Care/Clinical Analytics, Providence Health Services; Dagmar Amtmann Ph.D., Research Professor, Department of Rehabilitation Medicine, University of Washington (expertise in rehabilitation psychology and psychometrics); and the breast cancer patient/survivor focus group at FHCRC (reviewed, tested and revised the surveys, prior to implementation). The authors thank for their hard work throughout the project: Mary Atwood CTR, Manager of the BCRD, Swedish Cancer Institute; Shlece Alexander B.Sc., Research Coordinator, Swedish Cancer Institute; Anna Holman B.Sc., Research Assistant, Swedish Cancer Institute; Xiaoyu Liu Ph.D. Bioinformatics, Swedish Cancer Institute; Diana Lowry MPH, Research Consultant, and Denise Albano MPH, Research Administration Manager, Fred Hutchinson Cancer Research Center.
NIH UG3 CA218909: Recurrence from Claims And PROs for SEER Enhancement (ReCAPSE). RE’s work is partially supported by the Rosalie and Harold Rea Brown Endowment.
© 2021, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.
- Breast cancer
- Cancer recurrence
- Patient-reported outcomes
ASJC Scopus subject areas