Access to information and consultation in oncofertility for young women with breast cancer: a population-based study

Our study is one of the few to provide a global view of the transmission of information on the risks of reduced fertility and access to oncofertility consultations at the regional level. Only 41% of women aged 40 or less were informed of the risk of infertility and the proportion of women benefiting from an oncofertility consultation was 28%. Between 2012 and 2017, we observe an increase in the transmission of information and consultation. This increase is explained by the fact that the second national cancer plan, launched in 2009, recalled that information on the risk of post-treatment Infertility is a major problem in patients recovering from treatment against the cancer.

Studies documenting access to fertility counseling and referral to fertility specialists have produced significantly different results depending on time period, survey response rate, geographic setting, cultural background, conception of the study and the outcome of interest. In a US survey of cancer survivor diagnoses between 1999 and 2009 in the state of Georgia, 59% of respondents said they had been counseled about the risk of infertility associated with both their cancer and its treatment, but the response rate in this survey was only 25%.¹¹. The fertility information rate exceeded 80% in a more recent US study of 2010-2012 full-center medical records in which a full-time patient navigator was dedicated to information and coordination of the preservation of fertility.¹²and 62% in a single-center US study of medical records from 2009 to 2013 from a large private academic medical center¹³. In Europe, a retrospective Dutch study showed that although the absolute number of patients receiving fertility preservation counseling has increased over time, only 9.8% of all potential patients under the age of 40 and taking in charge at a university hospital in 2011 were referred for advice.¹⁴. An Ontario registry study of young women aged 15 to 39 with breast cancer diagnosed between 2000 and 2016 found an average infertility consultation rate of 4% over the entire period. However, the rate has steadily increased over time, from less than 1% in 2000 to over 10% after 2014.¹⁵. Another Ontario registry study of lymphoma cases diagnosed between 2000 and 2018 in young patients aged 15 to 39 found a steady increase in the infertility consultation rate, from 1% between 2000 and 2006 to 7.9% between 2014 and 2018.¹⁶. More recently, the PREFER study, an observational and prospective study on premenopausal women with early breast cancer, shows that after having been informed of the risks associated with chemotherapy, complete reproductive counseling carried out in a fertility unit was accepted by 34.6% of women between the ages of 18 and 40¹⁷. The VICAN study, on French cancer survivors 2 and 5 years after cancer diagnosis in 2010, 32.6% of women said they had received FP counseling before cancer treatment¹⁸.

Like ours, all of these studies found that the higher the woman’s age and parity at diagnosis, the lower the use of information and the use of consultations. This could be because a lot of information needs to be provided during the disclosure consultation. In an older woman and/or who has already had children, the risk of infertility seems to be a lower priority.

Our study has certain limitations. First, he may have slightly underestimated the amount of information provided to patients. It was sometimes difficult to trace the transmission of information by the oncologist. Since this information was in the patient’s charts, we assumed that the doctor had discussed possible chemotherapy-related fertility issues with them. However, the communication of information may not have been noted at any time, either because the doctor forgot to note it in the consultation report, or because it appeared in another document to which we have not had access. The fact that the frequency of missing data was significant for other variables associated with a low rate of patient information is consistent with this (Appendix 1A). Data was missing more frequently in private hospitals, and patient information appeared to be transmitted less often in these facilities. However, the importance of this bias should be put into perspective because there was also an association between the proportion of missing data and the fact of not having benefited from an oncofertility consultation. Nevertheless, contrary to the information given to a patient, the existence of a consultation could be objectively established since we cross-referenced our files with those of the only two fertility centers in the region.

Another limitation is that we did not consider women’s desire to have a child, which is a fundamental consideration before deciding on gamete storage. Unfortunately, there was very little information about this in the medical records and we could not use it for our analysis. In addition, we did not wish to question the women directly for certain reasons. We think it would have been difficult to discuss the risk of reduced fertility after the fact with women who had not been informed about it beforehand. The fact that we did not question the women directly did not allow us to verify whether they had been correctly informed, nor their desire for a child at the time of the diagnosis.

With regard to social deprivation, we did not find a significant link between the level of deprivation and the transmission of information or the use of consultation. On the other hand, Mahey et al.¹⁹ found that women’s knowledge of risk was low and varied along the socioeconomic gradient. Moreover, in a retrospective study from 2012, Letourneau et al. showed that women without a baccalaureate were less aware of the risks of infertility²⁰. The lack of significance of this factor in our study may be due to the fact that we used an ecological index of deprivation and not an individual indicator. However, we found geographical inequalities, since women treated in hospitals located in the regional capital were much more informed and had a much higher consultation rate than those treated in peripheral centers. This is probably because the only two centers in the region that carry out gamete conservation are located in Toulouse.

We hypothesized that a short delay between the diagnosis and the initiation of chemotherapy, which is the case if chemotherapy is the first treatment, and particularly in the case of neoadjuvant chemotherapy, could be a brake on the implementation of fertility preservation. Our results do not support this hypothesis because we did not observe any association between the receipt of neoadjuvant chemotherapy and the transmission of information or the use of consultation. A recent meta-analysis demonstrates that practicing fertility preservation after diagnosis does not appear to worsen the prognosis of breast cancer in young patients but, as the study author points out, there is a risk of bias in selection of patients with a favorable prognosis. features²¹. We also examined the association with triple-negative status, which was also not associated with providing information or consulting. On the other hand, women with early metastatic cancer were significantly less informed and had less recourse to counselling. These women may have considered that talking about fertility preservation would have been a waste of “precious” time in the face of a poor prognosis. However, French law stipulates that all women must be informed. Thus, this obligation to inform may seem questionable in this case.²². On the other hand, more and more teams agree to also offer it to women who will receive hormone therapy alone. This will delay the plan to get pregnant by 3 to 5 years, making it more difficult for these women to have a child due to their advanced age and reduced fertility.²³.

The amount of information transmitted, and therefore the use of consultations, depends on the oncologists. This oncologist effect is partly linked to the profile of the patients they treat, but it is also linked to the type of hospital in which they work. Women who have been treated at the CHU, and more generally those who have been treated in the regional capital, are more likely to be informed and to have a consultation than the others. The oncologist effect also seems to depend on whether the doctor is a man or a woman, particularly with regard to information on the risk of infertility. These results are consistent with Shimuzi’s study, which showed that younger oncologists and female oncologists were more likely to refer their patients to a reproductive specialist.²⁴. This suggests that strategies are needed to mitigate these deficits in access to fertility preservation. Several decision support tools exist for patients, for example in Australia²⁵Canada²⁶UNITED KINGDOM²⁷and Europe^28,29. In Canada, a quasi-experimental study compared the rate of patients who reported having been informed of fertility problems between two university centres, only one of which had a nurse navigator program dedicated to young cancer patients. A higher rate of self-reported information (+20%) and a higher rate of referral to fertility preservation (+40%) were observed in the center with the nurse navigator program than in the center where a such intervention did not exist. The nurse navigator reviewed referrals to the cancer center, contacted all women aged 40 or younger before or at their first appointment, and followed them through diagnosis, treatment, and beyond, especially to raise age-related issues including fertility, genetics and sexual health.³⁰. More recently, a multicomponent randomized trial compared on-demand consultation and referral to the combination of provider training, patient decision support, and navigation support^27,31.