Validity of self-reported fertility-threatening cancer treatments in female young adult cancer survivors
Detailed cancer treatment information is important to fertility and pregnancy care of female young adult cancer survivors. Accuracy of self-report of treatments that impact fertility and pregnancy is unknown. This study assessed agreement between self-report and medical records on receipt of fertility-threatening treatments.
A national cohort study of female young adult cancer survivors reported cancer treatments via Web-based questionnaires. Primary cancer treatment records were abstracted. Self-reported exposure to fertility-threatening therapies (alkylating chemotherapy, stem cell transplant, pelvic radiation, hysterectomy, and/or oophorectomy) was compared to medical records. Logistic regression models estimated odds ratios (OR) for characteristics associated with inaccurate self-report of fertility-threatening therapies.
The study included 101 survivors (mean age 28.2, SD 6.3). Lymphoma (33%), breast cancer (26%), and gynecologic cancers (10%) were the most common cancers. Accuracy of self-report was 68% for alkylating chemotherapy and 92–97% for radiation, surgery, and transplant. Significant proportions of survivors who were treated with transplant (8/13, 62%), alkylating chemotherapy (18/43, 42%), pelvic radiation (4/13, 31%), or hysterectomy and/or oophorectomy (3/13, 23%) did not report undergoing these therapies. In adjusted analysis, age ≤ 25 at diagnosis (OR 3.4, 95% CI 1.3–8.7) and recurrence (OR 6.0, 95% CI 1.5–24.4) were related to inaccurate self-report.
Female young adult cancer survivors have limited recall of fertility-threatening cancer treatment exposures. Reproductive health providers and researchers who need this information may require primary medical records or treatment summaries.
Implications for Cancer Survivors
Additional patient education regarding treatment-related reproductive risks is needed to facilitate patient engagement in survivorship. Obtaining a cancer treatment summary will help survivors communicate their prior treatment exposures to reproductive healthcare providers.
KeywordsCancer survivorship Cancer treatment Fertility Medical records Pregnancy Self-report Young adults
The authors would like to thank the FIRST investigators and participants, Stupid Cancer! Foundation and Fertile Action for their contributions to this study.
Compliance with ethical standards
This study was funded by the National Institute of Health, grant number: UL1 RR024926 pilot and R01 HD080952-03. The funding source had no contributions to the study design, collection, analysis, and interpretation of data, writing this report or the decision to submit the article for publication.
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Informed consent was obtained from all individual participants included in the study.
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