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Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors

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Abstract

Purpose

We sought to determine what women recall about reproductive health risks (RHR) from cancer therapy at the time of cancer diagnosis in order to identify barriers to reproductive health counseling (RHC) and fertility preservation (FP).

Methods

Data were obtained by surveying 1,041 female cancer survivors from the California Cancer Registry. Inclusion criteria included women age 18–40 with a diagnosis of leukemia, Hodgkin’s disease, non-Hodgkin’s lymphoma, breast or GI cancer diagnosed between 1993 and 2007. Women were asked to respond to an open-ended question: “what did your doctor tell you about how cancer treatment could affect your ability to get pregnant?” Framework analysis was used to identify themes surrounding patient perceptions of RHC.

Results

Of the patients, 51.8 % (361 out of 697) recalled receiving reproductive health counseling and 12.2 % (85 out of 697) recalled receiving FP counseling. Of the patients, 45.3 % (277 out of 612) reported that uncertain prognosis, risk of recurrence or vertical transmission, age, parity, or uncertain desire may have prevented them from receiving timely and essential information on RHRs. Communication barriers included omission of information, failure to disclose RHRs, and presentation of incorrect information on FP.

Discussion

In a sample of women diagnosed with cancer of reproductive age, almost half did not recall counseling on RHRs and few recalled FP counseling. Communication barriers between physicians and patients regarding fertility may lead to uninformed (reproductive health) RH decisions.

Implications for cancer survivors

Many women may not receive adequate information about RHRs or FP at the time of cancer diagnosis. Advancements in reproductive technology and emerging organizations that cover financial costs of FP have dramatically changed what options women have to preserve their fertility. Routine and thoughtful RHR and FP counseling, as well as collaborative cancer care will help ensure that women diagnosed with cancer are provided with the services and information they need to make an informed choice about their reproductive future.

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Support

Niemasik’s contribution was supported by NIH/NCRR/OD UCSF-CTSI Grant Number TL1 RR024129. Its contents are solely the responsibility of the authors and do not represent the official views of the NIH.

Disclaimers

The project was supported by National Institute of Health Grant Number TL1 RR024129. The National Institute of Health had no role in the study design, in collection, analysis and interpretation of data, in the writing of the report, or in the decision to submit this paper for publication. The authors have no conflicts of interest to declare.

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Correspondence to Erin Ebbel Niemasik.

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Niemasik, E.E., Letourneau, J., Dohan, D. et al. Patient perceptions of reproductive health counseling at the time of cancer diagnosis: a qualitative study of female California cancer survivors. J Cancer Surviv 6, 324–332 (2012). https://doi.org/10.1007/s11764-012-0227-9

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