Breast cancer survivors accurately reported key treatment and prognostic characteristics

J Clin Epidemiol. 2005 Apr;58(4):364-9. doi: 10.1016/j.jclinepi.2004.09.005.


Background and objective: Medical records are considered the gold standard for information on cancer treatments and prognosis. We compared survivor self-report and medical records for agreement on key treatment and prognostic characteristics.

Study design and setting: A population-based study was conducted in Quebec assessing work experience among breast cancer survivors aged <60 years at diagnosis. Data came from a single telephone interview 3.4 +/- 0.2 years after diagnosis. Medical record data were available for 103 out of 646 participants.

Results: Agreement of self-report with medical record data was very high for treatments (breast surgery, type of mastectomy, axillary dissection, radiotherapy, chemotherapy, hormone therapy, reconstruction, bone marrow transplantation). Kappa values varied from 0.89 for axillary dissection to 1.00 for breast surgery. Kappa values for number of invaded nodes (0, 1-3, >/=4, unknown) was slightly lower (0.85) but was still excellent. When accepting answers +/-1 month of the medical record date, >/=89% of women correctly reported different treatment dates.

Conclusion: These results provide evidence of the validity of summary treatment and prognostic data reported by breast cancer survivors 3 years after diagnosis. Survivors can likely accurately describe the treatment trajectory and key prognostic information when medical record review is unfeasible. These findings may need replication among older women.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Breast Neoplasms / mortality
  • Breast Neoplasms / therapy*
  • Combined Modality Therapy / methods
  • Female
  • Humans
  • Medical History Taking / methods*
  • Mental Recall
  • Middle Aged
  • Prognosis
  • Quebec
  • Retrospective Studies
  • Socioeconomic Factors
  • Surveys and Questionnaires
  • Survivors*
  • Treatment Outcome