A Geospatial Analysis of Disparities in Access to Oncofertility Services.

Importance: Fertility preservation (FP), including oocyte and embryo cryopreservation prior to gonadotoxic therapy, is an urgent and essential component of comprehensive cancer care. Geographic proximity to a center offering FP is a critical component of ensuring equitable access for people with cancer desiring future fertility. Objective: To characterize the distribution of centers offering FP services in the US, quantify the number of self-identified reproductive-age female individuals living outside of geographically accessible areas, and investigate the association between geographic access and state FP mandates. Design, Setting, and Participants: This cross-sectional analysis calculated 2-hour travel time isochrone maps for each center based on latitude and longitude coordinates. Population-based geospatial analysis in the US was used in this study. Fertility clinics identified through the 2018 Centers for Disease Control and Prevention Fertility Clinic Success Rates Report were defined as oncofertility centers by meeting 4 criteria: (1) offered oocyte and embryo cryopreservation, (2) performed at least 1 FP cycle in 2018, (3) served people without partners, and (4) had an accredited laboratory. County-level data were obtained from the 2020 US Census, with the primary at-risk population identified as reproductive-age female individuals aged 15 years to 44 years. The analysis was performed from 2021 to 2022. Exposures: Location outside of 2-hour travel time isochrone of an oncofertility center. Main Outcomes and Measures: Oncofertility centers were compared with centers not meeting criteria and were classified by US region, state FP mandate status, number of assisted reproductive technology cycles performed, and number of FP cycles performed. The number and percentage of at-risk patients, defined as those living outside of accessible service areas by state, were identified. Results: Among 456 Centers for Disease Control and Prevention-reporting fertility clinics, 86 (18.9%) did not meet the criteria as an oncofertility center. A total of 3.63 million (5.70%) reproductive-age female individuals lack geographic access to an oncofertility center. States with FP mandates have the highest rates of eligible female patients with geographic access (98.54%), while states without active or pending legislation have the lowest rates (79.57%). The greatest disparities in geographic access to care are most concentrated in the Mountain West and West North Central regions. Conclusions and Relevance: Patients face numerous barriers to comprehensive cancer care, including a lack of geographic access to centers capable of offering FP services. This cross-sectional study identified disparities in geographic access and potential opportunities for strategic expansion.

Fertility Preservation Legislation in the United States: Potential Implications for Transgender Individuals.

Gender-affirming hormones may compromise gonadal function leading to subfertility or infertility. Fertility preservation (FP; i.e., egg and sperm "freezing") before starting hormones offers future options to transgender individuals. In the United States, FP is extremely expensive and rarely covered by medical insurance; state-specific laws govern required benefits. Recent changes in insurance mandates in Connecticut, Delaware, Illinois, Maryland, New Hampshire, New York, and Rhode Island have expanded FP coverage, but implications of these changes for transgender individuals are unclear. State-by-state advocacy to expand insurance coverage for FP in individuals whose medically necessary treatments compromise fertility should consider the needs of transgender individuals desiring biological parenthood.

Financial Assistance for Fertility Preservation Among Adolescent and Young Adult Cancer Patients: A Utilization Review of the Sharing Hope/LIVESTRONG Fertility Financial Assistance Program.

Purpose: Fertility preservation (FP) is a critical component of adolescent and young adult (AYA) cancer care that remains inadequately delivered. Prohibitive cost due to a lack of insurance coverage remains a barrier. Since 2004 Sharing Hope/LIVESTRONG Fertility has assisted AYA cancer patients through discounted FP rates and access to free medications. Methods: Demographics, cancer diagnoses, and dollars saved by patients who used the Sharing Hope/LIVESTRONG Fertility program from 2004 to 2011 were retrospectively reviewed and reported using descriptive statistics. Utilization of financial services for the most common diagnoses was compared with the rate of diagnosis among AYAs. Results: One thousand one hundred fifty men and 1301 women received assistance between 2004 and 2011. Median age was 24 years (range, 12-67) for men and 30 years (range, 13-49) for women. Breast cancer, Hodgkin lymphoma (HL), and genitourinary cancers were the most common diagnoses among females; testicular cancer and HL were most common among males. Recipients represented 1245 cancer centers across the United States. Average cost savings was $6587 per female and $386 per male. Program utilization/diagnosis ranged from 0.8% to 2.7%. Conclusion: Utilization of financial assistance for FP was low despite literature pointing to the need for such assistance. Costs for FP for women far exceed those for men. State-specific insurance initiatives are beginning to mandate coverage for FP. As insurance coverage expands, further studies are needed to determine the true financial burden to patients, the degree to which lack of resources prevent FP in this population, and the impact that insurance coverage has on the provision of these services.

Comparing fertility preservation resources and policies between NCCN member and non-member institutions.

PURPOSE: The National Comprehensive Cancer Network (NCCN) created guidelines to facilitate implementation of fertility preservation (FP) discussions and referrals for adolescent and young adult patients. We assessed if availability of workplace FP resources and referral policies differed among learners in the Educating Nurses about Reproductive Health in Cancer Healthcare (ENRICH) training program based on NCCN membership. METHODS: Learners completed a baseline application, including demographic information and the availability of FP resources and referral policies. Learners were categorized as either NCCN members or non-members and chi-square tests compared resources between the two groups. RESULTS: Learners from NCCN institutions reported the highest rates of established FP referral guidelines (p < .01), reproductive endocrinologist and infertility specialist (REI) on staff (p < .01), partnerships with REI, educational materials for staff (p < .05), and patients (p < .01). CONCLUSION: FP resources and referral policies were highest among learners from NCCN member institutions, but areas for development with fertility issues still exist and learners from non-member institutions may assist their workplaces in improving rates of discussions and referrals based on their ENRICH training. PRACTICE IMPLICATIONS: The variation of available resources and referral policies between groups suggests more FP education and training; focusing on implementation programs is needed to make steps towards impactful institutional level resources and policies.

Fertility Preservation in Patients With Cancer: ASCO Clinical Practice Guideline Update.

Purpose To provide current recommendations about fertility preservation for adults and children with cancer. Methods A systematic review of the literature published from January 2013 to March 2017 was completed using PubMed and the Cochrane Library. An Update Panel reviewed the identified publications. Results There were 61 publications identified and reviewed. None of these publications prompted a significant change in the 2013 recommendations. Recommendations Health care providers should initiate the discussion on the possibility of infertility with patients with cancer treated during their reproductive years or with parents/guardians of children as early as possible. Providers should be prepared to discuss fertility preservation options and/or to refer all potential patients to appropriate reproductive specialists. Although patients may be focused initially on their cancer diagnosis, providers should advise patients regarding potential threats to fertility as early as possible in the treatment process so as to allow for the widest array of options for fertility preservation. The discussion should be documented. Sperm, oocyte, and embryo cryopreservation are considered standard practice and are widely available. There is conflicting evidence to recommend gonadotrophin-releasing hormone agonists (GnRHa) and other means of ovarian suppression for fertility preservation. The Panel recognizes that, when proven fertility preservation methods are not feasible, and in the setting of young women with breast cancer, GnRHa may be offered to patients in the hope of reducing the likelihood of chemotherapy-induced ovarian insufficiency. GnRHa should not be used in place of proven fertility preservation methods. The panel notes that the field of ovarian tissue cryopreservation is advancing quickly and may evolve to become standard therapy in the future. Additional information is available at www.asco.org/survivorship-guidelines .

ENRICH: A promising oncology nurse training program to implement ASCO clinical practice guidelines on fertility for AYA cancer patients.

OBJECTIVE: We describe the impact of ENRICH (Educating Nurses about Reproductive Issues in Cancer Healthcare), a web-based communication-skill-building curriculum for oncology nurses regarding AYA fertility and other reproductive health issues. METHODS: Participants completed an 8-week course that incorporated didactic content, case studies, and interactive learning. Each learner completed a pre- and post-test assessing knowledge and a 6-month follow-up survey assessing learner behaviors and institutional changes. RESULTS: Out of 77 participants, the majority (72%) scored higher on the post-test. Fifty-four participants completed the follow-up survey: 41% reviewed current institutional practices, 20% formed a committee, and 37% gathered patient materials or financial resources (22%). Participants also reported new policies (30%), in-service education (37%), new patient education materials (26%), a patient navigator role (28%), and workplace collaborations with reproductive specialists (46%). CONCLUSION: ENRICH improved nurses' knowledge and involvement in activities addressing fertility needs of oncology patients. Our study provides a readily accessible model to prepare oncology nurses to integrate American Society of Clinical Oncology guidelines and improve Quality Oncology Practice Initiative measures related to fertility. PRACTICE IMPLICATIONS: Nurses will be better prepared to discuss important survivorship issues related to fertility and reproductive health, leading to improved quality of life outcomes for AYAs.

Expanding the Oncofertility Workforce: Training Allied Health Professionals to Improve Health Outcomes for Adolescents and Young Adults.

As cancer survivors live longer, fertility and reproductive health become important health concerns. Like other secondary effects of cancer treatment, these anticipated health risks should be addressed before the initiation of cancer treatment. While existing and emerging technologies may prevent or reduce risk of infertility (e.g., sperm, oocyte, embryo, or tissue banking), the lack of a trained workforce knowledgeable about oncology and reproductive health poses a barrier to care. The allied health professional (AHP) is a target of opportunity because of the direct and sustained patient relationships. Thus, developing tailored educational programs for nurses, social workers, psychologists, and physician assistants is an urgent unmet need toward field building. In this report, we outline results from a pilot study evaluating AHP perceptions of an oncology and reproductive health curriculum originally developed for nurses and adapted to meet the needs of several other AHP groups.

If you did not document it, it did not happen: rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients' medical records.

PURPOSE: The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. METHODS: All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. RESULTS: Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% documented referral to a fertility specialist. Records were less likely to contain evidence of infertility risk and FP option discussions for female patients (P = .030 and .004, respectively) and those with breast cancer (P = .021 and < .001, respectively). Records for Hispanic/Latino patients were less likely to contain evidence of infertility risk discussion (P = .037). Records were less likely to document infertility risk discussion, FP option discussion, and fertility specialist referral for patients age ≥ 40 years (P < .001, < .001, and .002, respectively) and those who already had children (all P < .001). CONCLUSION: The overall rate of documentation of discussion of FP is low, and results show disparities among specific groups. Although greater numbers of discussions may be occurring, there is a need to create interventions to improve documentation.

Oncofertility resources at NCI-designated comprehensive cancer centers.

NCI-designated comprehensive cancer centers (CCCs) set the standard for providing exemplary patient care. Quality cancer care includes discussions about fertility and referrals to fertility specialists for patients at risk for sterility. This study sought to determine what fertility preservation (FP) resources are available in CCCs and how well those are integrated into patient care. Leaders at each CCC received a letter requesting a short telephone interview with individuals who could provide information about the institution's FP resources. A semi-structured interview guide was used and responses were audio-recorded. Data were analyzed using content and thematic analysis. Interviews were conducted with 30 of the 39 CCCs that see adult patients (77%). The remaining institutions included 4 nonresponders, 3 that referred the interviewers to childhood cancer survivorship clinics, 1 that refused, and 1 that could not identify any FP resources. Participants were primarily affiliated with reproductive endocrinology (n=15) or hematology/oncology divisions (n=10). Institutional policies regarding consistent provision of FP information were rare (n=4), although most sites (n=20) either had some services on-site or had referral programs (n=8). However, only 13 had some experimental services, such as ovarian tissue cryopreservation. Respondents reported barriers to provision of FP, including oncologists' identification of patients at risk, low referral rates, and perceptions of patient prognosis. Only 8 (27%) sites had staff with time dedicated to FP. CCCs vary widely in implementing FP-recommended practice to their patients. CCCs are positioned to provide exemplary oncofertility care, but most need to better integrate FP information and referral into practice.

Implementing a systematic approach to meeting patients' cancer and fertility needs: a review of the Fertile Hope Centers Of Excellence program.

PURPOSE: National guidelines recommend patients with cancer of reproductive age be informed of their risk for infertility resulting from cancer treatment. Despite existing technologies to preserve fertility, many patients report not receiving timely information about fertility risk, and oncology providers report multiple barriers to discussing or referring patients on this topic. METHODS: Nine cancer centers have been recognized as Fertile Hope Centers of Excellence, a designation awarded to cancer centers with an institutionalized approach to addressing fertility issues. Individual semistructured interviews were conducted with each of these centers to identify strengths of and challenges to their approaches. RESULTS: All institutions had procedures for the provision of topical professional and patient education and for notification of patients. Notification methods varied widely, from use of customized consent forms to highly automated electronic alerts for providers. Referral routines and enactment of institutional policies also differed. Key components of successful programs emerged, including the value of internal champions, affiliation with complementary programs, and resource sharing. CONCLUSION: The programs described provide examples of systems that can be assembled in different types of clinical settings, depending on the availability of resources and infrastructure. As institutions develop programs, metrics to evaluate notification systems, in particular, as well as the supportive program components, should be used so identification of best practices can continue. Widespread adoption of programs that incorporate the baseline elements identified will not only comply with national guidelines but also address patients' reproductive needs and fundamentally affect future quality of life.

Oncologists' use of patient educational materials about cancer and fertility preservation.

BACKGROUND: This study sought to determine the prevalence of distribution of fertility preservation (FP) materials, source of the materials, and providers' perceived relevance of the materials among a sample of US oncologists. METHODS: A 53-item survey was administered via mail and the Web to a stratified sample of oncologists from the American Medical Association Masterfile. This study represents a subset of results, reporting on three survey items. RESULTS: Among the 511 oncologists (32% response rate), only 13.5% (n = 69) reported 'always or often' giving their patients educational materials about FP. Among those who reported ever distributing materials, 39.5% used American Cancer Society materials, 11.0% used Fertile Hope, 6.4% used Lance Armstrong Foundation, and 11.8% used 'other'. Among those who provided materials, only 27.4% believe the FP materials they provide are 'relevant to patient's specific cancer diagnosis'. CONCLUSION: There is need to improve oncologists' distribution of FP educational materials to patients with cancer.

Developing a referral system for fertility preservation among patients with newly diagnosed cancer.

The goal of this project was to develop a referral system to increase the likelihood that patients of childbearing age with newly diagnosed cancer receive timely information about fertility, and reduce the burden oncologists may feel when discussing and exploring fertility preservation options with their patients. The group developed and examined the effectiveness of a fertility preservation referral system through pilot-testing a developed patient education brochure. During the 12-month pilot-testing period, 776 patients of childbearing age (< 40 years) were seen at H. Lee Moffitt Cancer Center and 349 brochures were taken. The reproductive endocrinologist/infertility clinic experienced a 9-fold increase in the number of calls received during the 12-month study period, with 122 calls received compared with 13 the prior year. The large increase in calls illuminates the gap in patient interest and referral, and shows an effective method to transmit this information. Improving the communication of time-sensitive information about fertility and preservation options to patients with cancer is associated with an increased likelihood of improving quality of life, reducing patient distress, and increasing use of ancillary fertility-related health services. Through referring and providing patient information, this referral system allows oncologists to fulfill their obligation and make informed decisions about fertility preservation, thereby improving the full cancer care continuum.