Though the prevalence of both counseling and of fertility preservation utilization has increased over time, there remains a large unmet need for fertility preservation. Across the state of California, it appears that certain groups of women are more likely to receive important information about reproductive health at the time of diagnosis, and are also more likely to preserve their fertility than others.
The prevalence of counseling and access to fertility preservation observed in this study is consistent with that previously reported by others. The 61% rate of counseling observed in our study is similar to previously reported rates of 34 to 72%.18
We observed that 4% of women underwent fertility preservation, which is consistent with the work of Jenninga and colleagues, whose data demonstrate a 2% rate of fertility preservation in the Netherlands between 2002 and 2008 as well as low utilization rates at academic medical centers in the United States.7,19,20
The observed 4% rate of utilization is also similar to the low utilization of infertility services in general.21
And, consistent with our observed rise in preservation rates starting in the year 2000, Lee and colleagues found over the last decade that women have become more likely to see a fertility doctor before cancer treatment to preserve fertility as opposed to seeing them afterward to treat infertility.22
Certain aspects of socioeconomic status appear to be associated with access to counseling about fertility loss and access to fertility preservation. For instance, women who graduate with a Bachelor’s degree are more likely to discuss the risks of cancer treatment to fertility than women who do not. This may reflect an assertiveness and proactive attitude on the part of patients with higher health literacy that may have been associated with patients being more likely to bring up the topic themselves. This is consistent with disparities seen in delivery of timely cancer care, where young women with lower levels of education are more likely to experience delays in diagnosis and treatment of cervical and breast cancers.11
Medical providers report their lack of awareness and comfort in discussing fertility, and their knowledge of available resources, as barriers to fertility discussions.23
A recent telephone survey of 282 French women, aged 20-44, who survived unspecified cancers indicated that, of the 37% of women who reported treatment-induced infertility, 30% of those women reported that they had not been informed of the risk of infertility before their treatment.24
Since oncologists often do not discuss fertility unless the patient raises the issue, patients may benefit from a certain education background in their ability to independently pursue further information.23
Household income may affect access. While we did not find a significant relationship between income and access, our relatively uneven distribution, with low sampling of women with incomes less than $30,000 may have limited our ability to detect true differences. Women whose household incomes are insufficient to adequately meet the basic needs of an average American family may be less likely to receive infertility counseling by their oncologists than women with higher incomes. Other studies including young women with cancer have showed that lower income is associated with poorer outcomes, including increased probability of delay in diagnosis.11
In a study of 314 cancer patients who were referred to a reproductive endocrinologist for fertility services, Lee and colleagues found no association between income and whether women were able to present in a timely fashion and preserve fertility versus whether they presented after cancer treatment with diagnosed infertility.22
Duffy and colleagues also showed in a study of 166 breast cancer survivors that income did not predict whether women were counseled about fertility issues by their oncologist.23
The possibility that income does impact one’s ability to access fertility preservation would not be surprising, given that fertility preservation is not routinely covered by insurance and that the costs of fertility preservation are significant.25
The average total cost of clinical services, consultations, procedures necessary to retrieve eggs and/or produce embryos, and freezing services is between $8,000 and $24,000.26,27
Women who understand the potential benefits of fertility preservation may be willing to make an extra effort to seek out additional resources. Despite the cost, it may be the case that women from lower income groups receive financial assistance from non-profit organizations or from family members. We also observed no difference in fertility preservation utilization between women who live in urban areas and those in rural areas, despite the need for women in rural regions to expend greater resources in order to travel further distances to specialized fertility centers.
We found no differences in counseling or fertility preservation with regard to partner status, but did show a trend toward decreased rates of fertility preservation for women who had previous children at the time of diagnosis. The finding that partner status does not predict counseling was also reported by Duffy and colleagues.23
Our study, like Duffy et al., also showed no difference with regard to counseling in women with previous children. However, there was a decrease in utilization of fertility preservation among women who were already parents at diagnosis, despite controlling for age and parenting desires. The emotional impact of not preserving fertility could be higher in women without previous children. In prior studies, women who experienced primary infertility (desired a child at diagnosis but were never able to have a child) experience greater distress than women with secondary infertility (had at least one child at diagnosis but were unable to have another).28,29
This study showed that women who are over 35 years old at diagnosis could less likely to be counseled than women in their early twenties, regardless of parenting desires or parity at diagnosis. This is consistent with the findings of Duffy and colleagues in young breast cancer patients.23
Age also predicted lower rates of fertility preservation in our study by univariate analysis, but the relationship did not retain significance in our multivariate model. Age at diagnosis has been associated increased risk of cancer recurrence, with difficulty in obtaining insurance, and in employment base discrimination of young women with cancer.30,31
Taken together with our findings, age could remain a focus of future study as a predictor of access to fertility preservation.
This is the first study to examine the association of sexual orientation and utilization. In a study of 249 oncologists across the United States, Forman et al. found that 1% of the reasons oncologists did not refer to a reproductive endocrinologist was because a patient identified as lesbian.8
Forman and colleagues study did not comment on childbearing desires, so it is difficult to know whether these women requested or declined referral based on parenting plans. This study demonstrates that there is no significant association between sexual orientation and oncologists counseling women about potential reproductive compromise after treatment. However, this study does show that, despite there being no significant differences in parenting desires based on sexual orientation, none of the women who identified with an orientation other than heterosexual preserved their fertility. Given the low overall utilization rates, our study may be underpowered, and possibly subject to sampling bias, with 31 women not identifying as heterosexual. Assessing the impact of sexual orientation on seeking fertility preservation should also be a focus of future research.
Caucasian women in our study appeared more likely to seek fertility preservation services than Latina or African American women, though our observation did not achieve statistical significance. This is in contrast to Lee and colleagues, who found that neither race nor ethnicity predicts whether women will present to fertility centers for fertility preservation before cancer treatment or for fertility care after cancer treatment.22
The data in our study are consistent with patterns seen with regard to health disparities in general infertility care, as women from many ethnic backgrounds are less likely to have access to any specialized fertility treatment, regardless of whether it be before or after a cancer diagnosis. African American women often seek fertility treatment after waiting a longer time with untreated infertility than Caucasian women.32,33
Low-income Latino immigrant patients, as well as African Americans and Arab Americans, face challenges in linguistic and cultural barriers as well as accessibility and affordability of treatment.34,35
Our findings are consistent with patterns seen in general infertility treatment in Massachusetts – a state with mandated insurance coverage for infertility services, where such services are disproportionately accessed by Caucasians, by the highly educated, and by the wealthy.33
This study has several important strengths and limitations. A significant proportion of the eligible participants in our study were not reached. However, the response was similar to that seen in several other registry-based studies of young female cancer survivors, with rates of 26-51%,3,15,36,37
And, given the importance of survivorship issues, the National Cancer Institute recently recommended the use of cancer registries as a means of conducting studies that could rapidly yield information about life after treatment.38,39
Despite the benefits of registry-based studies, the possibility of sampling bias remains a concern in this study. While women who responded were slightly younger at diagnosis than those who did not, there were no differences with regard to socioeconomic status. It is also likely, given the consistency of our counseling and preservation rates with other studies, that we achieved a relatively accurate sampling of the population, with regard to previous exposure to fertility preservation. However, other important confounding factors that were not controlled for in our study include the absence of information regarding current disease state (i.e., recurrence or not), and residual side effects.
We’ve observed that women who are childless, younger, Caucasian, heterosexual, and who graduated from college may be more likely than women of different backgrounds to be counseled about the risks of cancer treatment to fertility or to preserve fertility before cancer treatment. A focus on the quality of counseling and the quantity of patients seeing a fertility specialist has likely led to improved rates of access over the last decade. However, failing to focus on equity will likely result in continued unequal distribution of reproductive health counseling and fertility preservation. An opportunity lies ahead to explore educational and policy interventions to ameliorate health disparities that may exist in the growing field of fertility preservation.