Addressing Barriers to Fertility Preservation for Cancer Patients: The Role of Oncofertility Patient Navigation

October 2021 Vol 12, No 10
Caroline S. Dorfman, PhD
Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC
Duke Supportive Care and Survivorship Center, Duke Cancer Institute, Duke University Medical Center, Durham, NC
Juliann M. Stalls, PhD
Department of Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC
Coleman Mills, MA
Duke Supportive Care and Survivorship Center, Duke Cancer Institute, Duke University Medical Center, Durham, NC
Shannon Voelkel, BS
Duke Supportive Care and Survivorship Center, Duke Cancer Institute, Duke University Medical Center, Durham, NC
Mallori Thompson, MA
Duke Supportive Care and Survivorship Center, Duke Cancer Institute, Duke University Medical Center, Durham, NC
Kelly S. Acharya, MD
Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology and Infertility, Duke University Medical Center, Durham, NC
Karen C. Baker, MD
Department of Surgery, Division of Urology, Duke University Medical Center, Durham, NC
Lars M. Wagner, MD
Department of Pediatrics, Division of Pediatric Hematology/Oncology, Duke University Medical Center, Durham, NC
Nolan Miller, MHA
Duke Cancer Institute, Duke University Medical Center, Durham, NC
Amy Boswell, MSN
Seattle Cancer Care Alliance, Seattle, WA
Cheyenne Corbett, PhD
Duke Supportive Care and Survivorship Center, Duke Cancer Institute, Duke University Medical Center, Durham, NC

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Background: Infertility is a common late effect for cancer survivors. Whereas assisted reproductive technology has made it possible for survivors to take steps to preserve fertility before starting treatment, only a minority of patients proceed with preservation. Patient-, provider-, health system-, and societal-level barriers to fertility preservation (FP) exist. Oncofertility patient navigation is a valuable resource for addressing FP barriers.

Objectives: To highlight the critical role of oncofertility patient navigation in addressing barriers to FP within an academic oncofertility program.

Methods: The role of the oncofertility patient navigator in reducing FP barriers, promoting informed decision-making, and ensuring program sustainability is described. Program metrics illustrating the impact of oncofertility patient navigation on referrals for FP counseling and access to FP in the last year also are provided.

Discussion: The oncofertility program at our academic adult and pediatric medical centers aims to facilitate rapid referral to fertility counseling and preservation services for postpubertal cancer patients. The patient navigator is integral to the success of the program. The navigator ensures that patients are: (1) well-informed about the potential impact of cancer on fertility and FP options, (2) aware of available resources (eg, financial) for pursuing FP, (3) able to access FP services if desired, and (4) well supported in making an informed FP decision. The inclusion of the patient navigator has led to an almost 2-fold increase in referrals for FP counseling in the past year over the historic annual average.

Conclusions: Our institution’s oncofertility program, with patient navigation at the core, provides a potential model for increasing patient access to oncofertility care and promoting program sustainability. Oncofertility patient navigation is a valuable resource for providing patients and families with education and support regarding FP decision-making, as well as addressing the multilevel barriers to FP.


Impaired fertility is a common late effect of cancer treatment for male and female survivors.1 Although the rates of impaired fertility for cancer survivors vary and are affected by several factors (eg, treatment type, dose, location, and patient age2), fertility changes can be significantly distressing for patients who desire biological children.3 For females, fertility preservation (FP) options, including oocyte or embryo cryopreservation, ovarian tissue cryopreservation, ovarian transposition, and ovarian suppression with gonadotropin-releasing hormone (GnRH) agonists (eg, leuprolide) may lead to greater options for family-building following treatment.2 For males, FP such as sperm cryopreservation may be used for patients aged >114 and/or Tanner stage 3 or higher.5 Although experimental, testicular tissue cryopreservation may be offered for prepubescent boys.6 Despite its availability, only 4% to 41% of females7,8 and 11% to 43%9,10 of males undergo FP. Patient-, provider-, health system-, and societal-level barriers to FP exist and may influence FP uptake.

Patient-Level Barriers

FP decisions are complex. Patients may feel hurried to make FP decisions due to a desire to begin cancer treatment quickly and concerns that the time required to preserve might result in treatment delays and contribute to poor cancer outcomes.11 This added time pressure may exacerbate cancer-related emotional distress and drive FP decisions rather than a patient’s fertility-related values.12 Decisions inconsistent with a patient’s values can contribute to posttreatment regret,12 which may affect quality of life.

Patients may not receive or remember receiving adequate information about the impact of cancer treatments on fertility or FP options.13,14 The degree to which survivors understand and internalize fertility-related information may impact FP decisions.15 If survivors do not fully appreciate the potential impact of cancer and treatments on fertility, they may not pursue FP. Patients with unmet fertility information needs can experience higher levels of decisional conflict,16 impacting their ability to make value-consistent decisions, and leading to decisional regret.

Patients pursuing FP often face limited or no insurance coverage for FP. For women, national averages range from $10,000 to $15,000 for oocyte and $11,000 to $15,000 for embryo preservation.17 The costs for males, although less, are still significant, ranging from $500 to $1000 for sperm cryopreservation,17 with additional costs incurred for surgical sperm retrieval. For both males and females, additional costs are often accrued, including annual storage fees. While financial assistance programs (eg, grants through nonprofit organizations) exist, they typically only cover a portion of FP costs. The onus of paying for FP falls on patients and families at a time when they have other significant cancer-related expenses. Cost, rather than desire for biological parenthood, may instead drive FP decisions.

For patients aged <18 years, FP decisions may be influenced by parents/guardians. Despite having a strong desire to participate in decisions related to FP and their future reproductive health, many minor patients do not feel included in care decisions.18 Several factors may influence whether minors are involved in FP decision-making, including: (1) the cost of procedures; (2) perceptions of the child’s ability to make the decision; (3) perceptions of whether the child would like to be included in the decision; (4) perceptions of whether the child will survive their cancer; (5) parents’/guardians’ attitudes toward FP; and (6) the family’s religious and/or cultural beliefs.18,19 However, the reproductive health concerns of minor patients may differ from those of their parents, and parents may underestimate their child’s concerns about the impact of cancer on fertility.20

Additionally, fertility-related discussions with the medical team may involve sensitive and potentially uncomfortable topics (eg, masturbation, sexual functioning). Patients, particularly adolescents, may feel embarrassed during these conversations,19 especially if they occur in the presence of their parents/guardians. Patients who report embarrassment may be less likely to continue FP conversations with their parents/guardians and providers and to consider FP.19

Provider-Level Barriers

Despite established guidelines and recommendations from professional organizations, (eg, American Society of Clinical Oncology21) for postpubertal patients to be provided with up-front consultation and rapid referral (eg, within 24-48 hours) for FP prior to initiating treatment, the number of formal FP referrals remains low.9,22 Provider-level barriers to FP referrals include: (1) limited knowledge of FP and training in discussing preservation options; (2) low self-efficacy for, or discomfort with, FP discussions; (3) viewing infertility as secondary to cancer treatment and/or as less relevant to oncology practice; (4) having concerns about cost (eg, financial, emotional, physical) to patients; (5) having concerns about the emotional impact of FP conversations on patients who may already be experiencing distress/information overload; (6) limited time during oncology appointments; and (7) concerns about a lack of positive outcomes from FP.11,14,19,23-25 An additional complicating factor is the pace with which the fields of reproductive endocrinology and infertility have changed. Provider awareness of new procedures allowing for shorter timelines for preservation (eg, random-start controlled ovarian stimulation) and surgical procedures for prepubescent patients (eg, ovarian tissue cryopreservation) may be low, making referral for these procedures less common.

Patient and disease characteristics also may influence fertility discussions. For example, providers are more likely to have conversations about the impact of treatment on fertility if patients are female, younger, or have certain cancer types (eg, breast cancer, lymphoma, leukemia, testicular cancer).26 In addition, factors such as patients’ satisfaction with fertility-related discussions, perceived support from their oncologist in making FP decisions, and level of distress may influence FP decision-making.27

Health System–Level Barriers

Variations in the structure, availability, and insurance coverage for reproductive healthcare contribute to health system–based barriers to FP.28 Billing practices, such as requiring up-front, out-of-pocket payment for fertility-related tests and procedures, may challenge patients’ abilities to proceed with FP at a time when they are simultaneously initiating and/or completing costly cancer treatments. For many patients, this remains true even when financial assistance for FP is available from grants or philanthropic funds.

Most adult patients receive cancer care in community settings,29 and very few community cancer centers have an affiliated fertility center. Providers may not be aware of or know how to refer to fertility centers, which may limit patient access to FP.23 Community fertility centers also may not be familiar with the unique needs of oncology patients. Collaboration between community cancer centers and fertility centers is necessary to ensure appropriate provision of services.

The expectations set by the health system may present another barrier. For example, oncology providers often have large caseloads, and providers have endorsed lack of time with patients as a significant barrier to FP discussions.25 Given these time constraints, providers may prioritize treatment discussions, potentially leaving patients with limited understanding of the impact of treatment on fertility and impacting referrals for fertility counseling and preservation.

Societal-Level Barriers

There are notable disparities in FP counseling and referrals among cancer patients. Particularly, disparities have been reported based on gender (among pediatric patients), education, cancer type, age, marital status, and race/ethnicity.7,26,30,31 For example, Latina and African American cancer patients are less likely to undergo FP than white cancer patients.7 Continued recognition of how disparities in care may impact uptake of FP is necessary to aid in the development of interventions to improve equity in access and care.

As previously noted, insurance coverage for FP also is inconsistent. Despite the known gonadotoxic effects of many cancer treatments, FP often is classified as an elective procedure by insurance carriers and thereby not deemed medically necessary.32 Advocacy is underway to mandate the coverage of FP procedures for cancer patients.32,33

Oncofertility Program Development: Identifying the Need for a Designated Oncofertility Patient Navigator

Although awareness of barriers to FP is important, it is necessary to develop actionable plans to address barriers and improve patient access to FP. Our institution’s oncofertility program aims to increase patient referrals for FP counseling and reduce barriers to accessing FP. Our goal is not to increase FP rates per se but rather to empower patients to make informed FP decisions. Program development required close collaboration among 3 distinct entities: the pediatric oncology (primarily treating patients aged <18 years), adult oncology (primarily treating patients aged ≥18 years), and fertility centers. Key stakeholders from each were identified, including representatives from pediatric and adult oncology, endocrinology (including reproductive endocrinology), urology, andrology, psychosocial fields (ie, medical family therapy, clinical psychology), program administration, and patient education. These individuals participated in monthly steering committee meetings during which barriers to FP for cancer patients within our health system were identified and a vision for care was established.

Working groups were established to further delineate and address FP barriers. Groups focused on: (1) establishing and honing clinical care pathways; (2) improving patient and provider FP education; (3) understanding and addressing patient- and system-level financial considerations associated with FP; (4) understanding ethical considerations associated with oncofertility care; and (5) developing a program of research to better understand patients’ fertility-related needs and develop interventions to address these needs. Working groups were comprised of interdisciplinary teams whose interests and expertise matched group goals.

While we hypothesized that involving a patient navigator in the oncofertility program would be beneficial, discussions among working group members highlighted the importance and value of having designated staff, and in particular, a dedicated oncofertility patient navigator, to achieving programmatic goals and reducing access barriers to fertility counseling and preservation. In this paper, we highlight the role of oncofertility navigation within our institution’s multidisciplinary oncofertility program.

Methods

First, we delineate the role of the oncofertility patient navigators within our oncofertility program, highlighting steps to reduce barriers to fertility counseling and FP and promote informed FP decision-making. Specifically, we discuss the navigator’s involvement in program implementation and sustainability. We then present metrics illustrating the impact of oncofertility patient navigation on referrals to FP counseling and access to FP in the last year. Independent samples t tests or chi-square, as appropriate, were used to compare individuals undergoing FP or attempting FP with those who did not on demographic variables. Descriptive statistics also are presented (Table).

Findings

Role of Navigation in Oncofertility Program Implementation

The oncofertility patient navigator has been integral to program implementation, providing education, resources, and support to patients and families and assistance to increase access to FP services (Figure 1). Our program was served by a nonclinical navigator; however, either a clinical or nonclinical navigator would be suitable for this role.

Education. As highlighted in previous literature, patients report unmet information needs regarding the impact of cancer on fertility and FP options.13,14 Furthermore, education about the timeline for FP in conjunction with rapid referral for fertility counseling is necessary to ensure that perceptions about delays in treatment do not contribute to patients’ FP decisions.34 The navigator serves as a key resource for providing patients with appropriate education, including: (1) the impact of cancer treatments on fertility; (2) what to expect during the fertility consultation; (3) the timelines for preservation for males and females; (4) the up-front and long-term costs of preservation, shipping, and storage; (5) the costs to use preserved specimens in the future; (6) support services to assist with FP decision-making; (7) the impact of cancer and treatments on sexual health and information about self-image and sexual health resources available within the institution; and (8) next steps related to FP and/or fertility assessment (eg, information about FP grants, options to check fertility status posttreatment). Patient education materials, utilizing plain language and health literacy concepts, were also developed and are provided to patients by the oncofertility navigator to further address patients’ unmet fertility information needs. By providing education, the oncofertility navigator is instrumental in assisting patients with making informed FP decisions.

Resources. In addition to providing education about FP and associated resources, the oncofertility navigator helps patients and families access these resources. For example, the navigator assesses patients’ eligibility for financial assistance for FP and assists patients with applying for external grants (eg, Livestrong, Team Maggie’s Dream) and/or other financial resources (eg, internal funds from philanthropic donations) that may help to offset costs of fertility-related procedures or specimen storage. The receipt of funds must occur in a timely fashion to allow preservation to occur prior to treatment initiation. The oncofertility patient navigator works closely with financial care counselors, social workers, the health system finance department, and financial managers at the fertility center to quickly assess patients’ eligibility for financial assistance and obtain and use any funds granted.

Access. The navigator also helps to address patients’ unique oncofertility access barriers. The primary access barriers endorsed by our patients are time to treatment onset, availability of FP appointments, and cost (outlined in greater detail above). Our fertility center is committed to seeing oncology patients within 48 hours of referral. Referral pathways have been developed for the adult and pediatric centers and both the inpatient and outpatient settings, which allow for early discussion of FP options and the development of a plan to assist with pursuing FP. Figure 2 provides an overview of the navigator’s role in the oncofertility care pathway.

Patients may be referred to the oncofertility program in 1 of 2 ways: (1) the oncofertility patient navigator reviews the medical record for patients and contacts patients about the program directly; or (2) the patient is referred to the oncofertility program by their healthcare provider. For interested patients, the navigator then coordinates consultation with our fertility center or a fertility center more easily accessible to the patient (eg, in-network for their insurance, geographically close to their home). The navigator communicates with all individuals involved in the patient’s care (eg, referring oncologist, fertility center staff) to understand the patient’s treatment timeline and assist with scheduling an FP consultation consistent with this timeline.

Support. In addition to addressing logistical access barriers, the navigator works to address patients’ and families’ FP questions or concerns by providing fertility education and informal emotional support. The navigator assists patients and families in making an informed decision about FP through the use of publicly available decision support tools (eg, the Adolescent Fertility Values Clarification Tool35). If more formal decisional and/or psychosocial support is needed, the navigator refers patients to team members with specialized behavioral health training within our institution (ie, medical family therapists, licensed clinical social workers, clinical psychologists, psychiatrists, and sex therapists). Other available resources include support groups and self-image services.

Role of the Navigator in Program Sustainability

To ensure oncofertility program sustainability, it is vital that established clinical care pathways are used and understood by the medical teams and continually refined based on provider feedback. The oncofertility navigator is involved in educating the medical teams about the established oncofertility referral pathways (eg, ambulatory referral within the electronic health record for outpatient fertility services) to ensure timely provision of education and referrals to the fertility center. The navigator also seeks feedback about the utility and efficiency of the care pathways to iteratively refine the pathways.

As the program grows, continued education of the medical teams regarding the availability of fertility services is key. The navigator regularly presents to interdisciplinary teams within disease-specific groups (eg, during tumor board meetings) about the oncofertility program. During these presentations, information is provided about: (1) oncofertility program services; (2) how to refer patients for services; (3) information necessary to include in referrals to allow the fertility center to appropriately time consultations to prevent treatment delays; and (4) what constitutes an emergent referral. The navigator also utilizes flyers (eg, posted in provider workrooms) to promote understanding of program services and the referral process.

To better address FP barriers and facilitate program development, it is important to conduct research to understand factors that may impact patients’ access to FP and fertility services. The navigator is involved in increasing patients’ awareness of research opportunities and connecting interested patients with research team members.

At the societal level, we are acutely aware of disparities in access to oncofertility services for racial and ethnic minorities and low-income patients. As we examine current program referrals, we track patient race and ethnicity to ensure equity in access to services and determine whether additional steps are necessary to engage racial and ethnic minority patients in FP discussions. Additionally, we have worked to expand philanthropic funds available through our institution to better address the financial burden of FP for low-income patients. Possible future directions for enhancing access to FP may include tailored outreach with community organizations serving racial and ethnic minority cancer patients (eg, Sisters Network Triangle NC).

Program Evaluation

Prior to establishing our program, referrals for oncology patients to our fertility center in the past 2 fiscal years averaged 54 referrals/year. Since hiring a designated navigator (February 2020-January 2021), our institution’s oncofertility program has received a total of 103 referrals, close to doubling the historical average within a 1-year period. This represents significant growth in access, especially when taken in the context of the COVID-19 pandemic. Within this time frame, each patient had access to the oncofertility patient navigator, was offered oncofertility education, support, and resources, and if they chose to undergo FP, were supported in applying for financial assistance through grants and philanthropic funds when eligible.

The 103 referrals included males (n = 43; 41.7%) and females (n = 60; 58.3%) treated in both inpatient and outpatient settings (Table). Patients ranged in age from 14 to 48 years. Close to 60% (n = 60) of these patients attempted (n = 3; 5%) or completed FP (n = 57; 95%). Patients undergoing FP or attempting FP were significantly younger than those who did not (M = 26.77, SD = 7.28 vs M = 33.16, SD = 6.66; t [101] = 4.555, P <.01), and males were more likely to preserve than females (X2 [df = 1, N = 103] = 10.38, P <.01). The sample of patients undergoing or attempting FP was racially diverse, with approximately one-third identifying as nonwhite. All males successfully completing FP engaged in sperm cryopreservation. Oocyte cryopreservation, embryo cryopreservation, or the exclusive use of GnRH agonists were used by 44%, 24%, and 32% of females who successfully completed FP, respectively. For many, having access to financial resources has made FP feasible when it may have otherwise been cost-prohibitive. The navigator’s assistance with applying for grants offering a range of financial support for FP has been a tremendous asset to the program.

While the increased number of patients who received fertility education from the navigator and subsequent fertility counseling from a fertility provider and ultimately proceeded with FP are encouraging, patients continue to endorse cost and time to treatment initiation as FP barriers. As our program continues to grow, we aim to better address these barriers. For example, we are investigating how to best advocate for policy change at the state level for expanded insurance coverage of FP. We also are exploring ways to increase patient and provider education efforts to ensure clear understanding of the timing of FP in relation to treatment initiation and better facilitate rapid referral for fertility counseling.

Discussion

In developing our institution’s oncofertility program, the intention was to identify and mitigate barriers to FP through education, assistance, advocacy, and institutional organization and commitment. This required an intentional, focused, and multidisciplinary effort, which culminated in the hiring of a dedicated oncofertility navigator. The navigator has been instrumental to program implementation, growth, improvement, and sustainability. By bridging gaps in care and addressing access barriers, the navigator carries out the program goals, providing education, resources, support, and timely access to fertility-related care. The involvement of the navigator also has allowed our program to actively evaluate care workflows to ensure timely referral for services and make continual, real-time improvements.

The navigator’s early involvement in patient care also has reduced provider burden by serving as a resource to equip patients with fertility education and access to referrals outside of an oncology visit. Additionally, the navigator has helped to engage patients to stay within the healthcare system. The navigator follows patients across the care continuum, addressing ongoing barriers and providing additional resources and referrals to services within the health system at each transition of care.

Future Directions

Our program is currently conducting an observational study, which, in part, aims to better understand correlates of FP discussions and subsequent FP decisions. Results of this and other research to examine barriers to preservation will assist with developing targeted, multilevel interventions to address patient-, provider-, and health system–level barriers.

Despite many available options for FP, some cancer survivors receiving gonadotoxic treatments have not had access to or been able to initiate FP at the time of diagnosis. This group of survivors also may require additional fertility education or support to help address potential barriers to having biological children. However, oncofertility programs often focus on the needs of newly diagnosed patients rather than the needs of longer-term survivors. The navigator can support patients who have completed active treatment in a variety of ways, including: (1) providing education about the possible impacts of treatment on fertility and sexual health; (2) providing education to support patients in making value-driven decisions about pursuing parenthood and in understanding family building options (eg, use of assisted reproductive technology, adoption); (3) coordinating referrals for infertility consultation; (4) supporting patients and families to seek financial support for infertility treatment and adoption through available grants; (5) supporting value-driven decision-making, which may or may not include pursuing family building; and (6) connecting patients and families with additional support services as needed (eg, mental health providers to assist with coping with infertility distress, provision of support through the adoption process). Additional investigation is needed to better understand the role of patient navigation in assisting cancer survivors with achieving parenthood, if desired, following treatment completion.

Conclusions

Despite an increase in the availability of FP options for cancer patients undergoing gonadotoxic therapies, only a minority of patients pursue FP. There are notable patient-, provider-, healthcare system–, and societal-level barriers for FP among cancer patients. Institutions aiming to address these barriers may benefit from the inclusion of a designated oncofertility patient navigator as they work to develop and implement their programs. Navigation is a valuable resource for providing patients and their families with FP decision-making support and addressing the multilevel barriers to FP.

Funding

Caroline S. Dorfman, PhD, was supported by a career development award from the National Institutes of Health (K08CA245107).

Conflicts of Interest

The authors declare no conflicts of interest.

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