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

Department of Obstetrics, Gynecology, and Reproductive Sciences, University of California San Francisco School of Medicine, San Francisco, CA 94115, USA.
Journal of Cancer Survivorship (Impact Factor: 3.3). 07/2012; 6(3):324-32. DOI: 10.1007/s11764-012-0227-9
Source: PubMed


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).
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.
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.
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.
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.

30 Reads
    • "A study byMancini et al. (2008)demonstrated that 30% of female and 13% of male patients had not undergone fertility preservation because they were unaware of its existence. Other studies have similarly documented the urgent need for young adult cancer patients to discuss their plans for parenthood, the possibility of infertility, and fertility preservation with their oncologists (Hill et al., 2012;Murphy et al., 2013;Niemasik et al., 2012). Despite of these studies,Forman et al. (2010)showed that 95% of oncologists report that they routinely discuss the possible risk of infertility after treatment and 39% oncologists refer patients to reproductive endocrinologists. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Purpose: Oncological treatments can cause serious long-term consequences, including effects on patients' fertility. Communication about possible fertility impairment is essential for cancer patients who want to have children. When oncologists initiate this discussion in a timely manner, patients can be referred to fertility specialists and avail themselves of fertility preservation methods. The oncologist plays a key role in this context. Methods: 30 cancer patients of childbearing age (21-43 years) took part in semi-structured interviews between March 2011 and April 2012 about fertility and their desire to have children. Interview transcripts were thematically analyzed. Results: Physician-patient consultations broached the issue as a central theme in almost all patients. A few consultations were patient initiated, and the majority took place before the beginning of treatment. Almost half of the patients were satisfied with their consultations and were referred to a fertility specialist. The ideal setting for these conversations is in the presence of the patient's partner, in a private space, before the beginning of treatment. Conclusions: All patients should be informed about the possibility of their fertility being impaired due to treatments, even if they have not explicitly expressed wanting children. The oncologist is the first and most important contact for the patient and, hence, should bring up the issue of family planning and fertility. An interdisciplinary communication and collaboration between oncologists and fertility specialists can improve patient care.
    No preview · Article · Oct 2015 · European journal of oncology nursing: the official journal of European Oncology Nursing Society
  • Source
    • "Improvement of survival rates after certain types of cancer (Belot et al., 2008), and particularly breast cancer (Shigematsu et al., 2011) with a survival rate of 74% at 10 years (Jooste et al., 2013), chronic lymphoid leukaemia (Maynadié et al., 2013) and Hodgkin lymphoma with survival rates exceeding 80% (Gatta et al., 2009), has led to increased consideration of quality of life after cancer. The preservation of female fertility is thus a question that oncologists and reproduction specialists need to address (Niemasik et al., 2012). There are many indications for fertility preservation, including the most gonadotoxic treatments, such as chemotherapy with alkylating agents, the myeloablative treatments administered before bone marrow transplantation or haematopoietic stem cell transplantation and high-dose abdominal/pelvic radiotherapy (Sonmezer and Oktay, 2004). "
    [Show abstract] [Hide abstract]
    ABSTRACT: What are the outcomes of French emergency IVF procedures involving embryo freezing for fertility preservation before gonadotoxic treatment? Pregnancy rates after emergency IVF, cryopreservation of embryos, storage, thawing and embryo transfer (embryo transfer), in the specific context of the preservation of female fertility, seem to be similar to those reported for infertile couples undergoing ART. A French retrospective multicentre cohort study initiated by the GRECOT network-the French Study Group for Ovarian and Testicular Cryopreservation. We sent an e-mail survey to the 97 French centres performing the assisted reproduction technique in 2011, asking whether the centre performed emergency IVF and requesting information about the patients' characteristics, indications, IVF cycles and laboratory and follow-up data. The response rate was 53.6% (52/97). Fourteen French centres reported that they performed emergency IVF (56 cycles in total) before gonadotoxic treatment, between 1999 and July 2011, in 52 patients. The patients had a mean age of 28.9 ± 4.3 years, and a median length of relationship of 3 years (1 month-15 years). Emergency IVF was indicated for haematological cancer (42%), brain tumour (23%), sarcoma (3.8%), mesothelioma (n = 1) and bowel cancer (n = 1). Gynaecological problems accounted for 17% of indications. In 7.7% of cases, emergency IVF was performed for autoimmune diseases. Among the 52 patients concerned, 28% (n = 14) had undergone previous courses of chemotherapy before beginning controlled ovarian stimulation (COS). The initiation of gonadotoxic treatment had to be delayed in 34% of the patients (n = 19). In total, 56 cycles were initiated. The mean duration of stimulation was 11.2 ± 2.5 days, with a mean peak estradiol concentration on the day on which ovulation was triggered of 1640 ± 1028 pg/ml. Three cycles were cancelled due to ovarian hyperstimulation syndrome (n = 1), poor response (n = 1) and treatment error (n = 1). A mean of 8.2 ± 4.8 oocytes were retrieved, with 6.1 ± 4.2 mature oocytes and 4.4 ± 3.3 pronuclear-stage embryos per cycle. The mean number of embryos frozen per cycle was 4.2 ± 3.1. During follow-up, three patients died from the consequences of their disease. For the 49 surviving patients, 22.5% of the couples concerned (n = 11) requested embryo replacement. A total of 33 embryos were thawed with a post-thawing survival rate of 76%. Embryo replacement was finally performed for 10 couples with a total of 25 embryos transferred, leading to one biochemical pregnancy, one miscarriage and three live births. Clinical pregnancy rate and live birth per couple who wanted a pregnancy after cancer were, respectively, 36% (95% CI = 10.9-69.2%) and 27% (95% CI = 6.0-61%). The overall response rate for clinics was 53.6%. Therefore, it is not only that patients may not have been included, but also that those that were included were biased towards the University sector with a response rate of 83% (25/30) for a small number of patients. According to literature, malignant disease is a risk factor for a poor response to COS. However, patients having emergency IVF before gonadotoxic treatment have a reasonable chance of pregnancy after embryo replacement. Embryo freezing is a valuable approach that should be included among the strategies used to preserve fertility. No external funding was sought for this study. None of the authors has any conflict of interest to declare.
    Full-text · Article · Jul 2013 · Human Reproduction
  • [Show abstract] [Hide abstract]
    ABSTRACT: Physicians taking care of young women with cancer have two problems to solve: fight against the disease and improve the patient’s quality of life after cancer. To manage this “after cancer period,” they should consider preservation of fertility. This may influence the choice of oncologic treatments and also the specific use of techniques used in the field of assisted reproductive medicine. We describe here the main current techniques of conservation of the feminine fertility in oncology.
    No preview · Article · May 2013 · Oncologie
Show more