Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.

Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.

Toward a theoretical understanding of young female cancer survivors' decision-making about family-building post-treatment.

PURPOSE: Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors' experiences and decision-making related to family-building after cancer. METHODS: Semi-structured interviews explored fertility and family-building themes (N = 25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis. RESULTS: Participants averaged 29 years old (SD = 6.2) were mostly White and educated. Four major themes were identified: sources of uncertainty, cognitive and emotional reactions, coping behaviors, and decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress, renegotiate identity, adjust expectations, and consider "next steps" toward family-building goals. Most AYA-Fs were unaware of their fertility status, felt uninformed about family-building options, and worried about expected challenges. Despite feeling that "action" was needed, many were stalled in decision-making to evaluate fertility or address information needs; postponement and avoidance were common. Younger AYA-Fs tended to be less concerned. CONCLUSION: AYA-Fs reported considerable uncertainty, distress, and unmet needs surrounding family-building decisions post-treatment. Support services are needed to better educate patients and provide opportunity for referral and early preparation for potential challenges. Reproductive counseling should occur throughout survivorship care to address medical, psychosocial, and financial difficulties, allow time for informed decision-making, and the opportunity to prepare for barriers such as high costs.

"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

OBJECTIVE: Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption. METHODS: Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis. RESULTS: Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines. CONCLUSION: After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.

Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors.

BACKGROUND: Cancer treatment may lead to premature menopause and infertility. Young adult female cancer survivors (YAFCS) are often concerned about their fertility and future family-building options, but research is limited on how concerns may affect more general quality of life (QOL) domains. This study examined how fertility factors relate to QOL among YAFCS who received gonadotoxic therapy. METHOD: A national sample of YAFCS completed an online, anonymous survey. The survey included investigator-designed questions about perceived fertility information needs (five items; Cronbach's α = .83) and general QOL (four items; α = .89), the Reproductive Concerns after Cancer Scale (RCACS) and Decisional Conflict Scale (DCS). Analyses included Pearson's correlation, t tests, and stepwise regression. RESULTS: Participants (N = 314) were an average of 30 years old (SD = 4.1) and 5 years (SD = 5.4) post-treatment; 31% reported being infertile and 19% had undergone fertility preservation (FP). Overall, QOL was relatively high (M = 7.3, SD = 1.9, range 0-10) and did not vary by fertility status (t[272] = .743, p = .46), prior FP (t[273] = .53, p = .55) or sociodemographic/clinical factors (p's > .05) except socioeconomic indicators (p's < .05).In separate models, greater unmet fertility information needs (ß = - .19, p = .004) and, among fertile women, greater reproductive concerns (ß = - .26, p = .001) related to lower QOL. Among fertile women without prior FP, greater decisional distress about future FP related to lower QOL (ß = - .19, p = .03). CONCLUSIONS: These preliminary findings suggest that unaddressed fertility information needs, concerns, and decision distress may affect general QOL among post-treatment YAFCS who hope to have children in the future. Future work should identify ways to optimally incorporate fertility counseling and support resources into survivorship care programs, including referrals to reproductive specialists as appropriate.

Robotically Assisted Laparoscopic Ovarian Transposition in Women with Lower Gastrointestinal Cancer Undergoing Pelvic Radiotherapy.

BACKGROUND: Pelvic radiotherapy (RT) is a standard component of the management for patients with locally advanced rectal cancer or squamous cell carcinoma of the anus. Pelvic RT leads to permanent and irreversible ovarian failure in young women. This study aimed to determine the effectiveness of robotically assisted laparoscopic ovarian transposition (OT) before RT in women with rectal or anal cancer who wanted to preserve normal ovarian function. METHODS: The study reviewed the medical records of all patients treated at our institution from August 2009 to October 2014 who received robotically assisted laparoscopic OT for rectal or anal cancer before RT. Clinical and hormonal data were abstracted to determine ovarian function. RESULTS: The study identified 22 women with rectal (n = 20) or anal (n = 2) cancer. The median age of the women was 39 years (range 26-45 years). For one patient, OT was technically not feasible. The postoperative course was uneventful in all but one case. Follow-up data on ovarian function were unavailable for 3 patients. The median times from RT initiation to the last gynecologic or hormonal evaluation were 9 months (range 5-47 months) and 10.5 months (range 5-47 months), respectively. At the last gynecologic or hormonal follow-up visit, ovarian function was preserved in 12 (67%) of 18 evaluable patients, including 9 (90%) of 10 patients 40 years of age or younger and 3 (38%) of 8 patients older than 40 years (P = 0.07). CONCLUSIONS: Robotically assisted laparoscopic bilateral OT is safe and can lead to preservation of ovarian function in two-thirds of patients with low gastrointestinal cancer undergoing pelvic RT. It should be considered in this setting, especially for women age 40 years or younger, to avoid premature menopause and its associated sequelae.

Young adult female cancer survivors' unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation.

BACKGROUND: Many young adult female cancer survivors (YAFCS) are at risk of experiencing premature menopause. The current study characterized the posttreatment fertility information needs, reproductive concerns, and decisional conflict regarding future options for posttreatment fertility preservation (FP) among YAFCS. METHODS: Participants completed a Web-based, anonymous survey between February and March 2015. The survey included investigator-designed questions of perceived information needs, the Reproductive Concerns After Cancer Scale, and the Decisional Conflict Scale. Analyses included Pearson correlation coefficients, independent-sample Student t tests, and multiple regression. RESULTS: There was a total of 346 participants with an average age of 29.9 years (SD = 4.1 years) who were 4.9 years from treatment (SD = 5.4 years [range, 0-27 years]). The main analyses focused on a subgroup of YAFCS with uncertain fertility status who had not previously undergone/attempted FP and either wanted future children or were unsure (179 women). Across fertility information topics, 43% to 62% of participants reported unmet information needs. The greatest reproductive concerns were related to fertility potential and the health of future offspring. The regression model controlled for a priori covariates including current age, age at treatment completion, income, relationship status, nulliparity, and prior fertility evaluation. Greater unmet information needs were found to be related to greater decisional conflict (ß = .43; p<.001); greater reproductive concerns were associated at the trend level (ß = .14, p = .08; F[8,118] = 6.42, p<.001). CONCLUSIONS: YAFCS with limited awareness or knowledge of their risk of experiencing premature menopause and FP options reported higher levels of decisional conflict regarding future FP. Posttreatment survivorship care should include comprehensive reproductive health counseling, including posttreatment FP options and family-building alternatives. Cancer 2016;122:2101-9. © 2016 American Cancer Society.

Fertility Preservation for the Young Breast Cancer Patient.

BACKGROUND: The American Society of Clinical Oncology (ASCO) guidelines include incorporation of fertility preservation guidelines in the care of breast oncology patients. This study aimed to examine the baseline knowledge and preferences concerning fertility preservation among women of childbearing age with newly diagnosed breast cancer at the time of their initial visit to Memorial Sloan Kettering Cancer Center (MSKCC). METHODS: A questionnaire on reproductive history, fertility knowledge, and preservation options was administered to women 18-45 years of age with newly diagnosed breast cancer at MSKCC between May and September 2011. RESULTS: The inclusion criteria were met by 60 women eligible for analysis who had a median age of 40 years (range 20-45 years). The findings showed that 50 % of the women either desired children in the future or were unsure whether they wanted children, with 9 % reporting that they received information about fertility preservation options before their MSKCC visit. Women who had never been pregnant were more likely than those with prior pregnancies to consider having children in the future (p = 0.001) and to contemplate fertility preservation options both before (p = 0.001) and after (p = 0.0002) cancer treatment. CONCLUSION: Early referral allows patients to take advantage of fertility preservation options while preventing delay in the initiation of systemic therapy. Referral by the breast surgical oncologist at the time of the initial visit has the potential to increase fertility knowledge because it appears that many women have not yet received fertility information at this early treatment stage.

Fertility Preservation Practices at Pediatric Oncology Institutions in the United States: A Report From the Children's Oncology Group.

PURPOSE: Fertility discussions are an integral part of comprehensive care for pediatric, adolescent, and young adult patients newly diagnosed with cancer and are supported by national guidelines. Current institutional practices are poorly understood. METHODS: A cross-sectional survey was distributed to 220 Children's Oncology Group member institutions regarding fertility discussion practices. Descriptive statistics were calculated for all variables. The association between specific practices and selected outcomes on the basis of sex was examined via multivariable logistic regression. RESULTS: One hundred forty-four programs (65.5%) returned surveys. Of these, 65 (45.1%) reported routine discussions of fertility with all female patients and 55 (38.5%) all male patients (P = .25). Ninety-two (63.8%) reported no specific criteria for offering females fertility preservation (FP), compared with 40 (27.7%) for males (P < .001). Program characteristics associated with fertility discussions included reproductive endocrinology and infertility on site (females odds ratio [OR], 2.1; 95% CI, 1.0 to 4.3), discussion documentation mandate (females OR, 2.3; 95% CI, 1.0 to 5.5; males OR, 3.5; 95% CI, 1.4 to 8.7), and cumulative institution-based FP infrastructure (which included [1] routine practice of documentation, [2] template for documentation, [3] mandate for documentation, and [4] availability of FP navigation; females OR, 1.6; 95% CI, 1.1 to 2.3; males OR, 2.3; 95% CI, 1.6 to 3.4). Utilization of practices unsupported by guidelines included offering sperm banking after treatment initiation (39/135 programs; 28.9%), gonadotropin-releasing hormone analogs for ovarian suppression/FP (75/144 programs; 52.1%), ovarian tissue cryopreservation at diagnosis for patients with leukemia (19/64 programs; 29.7%), and testicular tissue cryopreservation (23/138 programs; 16.7%) not part of a clinical trial. CONCLUSION: Despite recommended guidelines, fertility discussions with patients/families before treatment initiation are not routine at Children's Oncology Group institutions. Standard criteria to determine which options should be offered to patients are more common for males than females.

Fertility preservation in primary brain tumor patients.

BACKGROUND: Fertility preservation (FP) is an infrequently addressed issue for young adults with primary brain tumors. Given the improved prognosis and enhanced technology in reproductive medicine, more primary brain tumor patients see procreation as feasible, making the discussion of FP increasingly important. The goals of this study were to describe patients who received FP counseling by a fertility nurse specialist (FNS) and determine which sociodemographic and disease-related factors predict acceptance of referral to a reproductive specialist. METHODS: Institutional review board-approved retrospective review of primary brain tumor patients, ages 18 to 45, who were referred for FP counseling with a FNS from 2009 to 2013. RESULTS: Seventy patients were referred for FP counseling: 38 men, 32 women, with a median age of 32 years and median KPS of 90. Eighty-nine percent had gliomas; 58% grade III, 17% grade IV. Sixty-seven percent were referred for counseling at initial diagnosis. Of those referred, 73% accepted referral to a sperm bank (87% of men) or reproductive endocrinologist (56% of women). Patients were more likely to accept referral if they had no prior children (P = .048). There was no statistically significant difference in referral acceptance by age, race/ethnicity, marital status, religion, or tumor grade. After treatment, 3 men conceived naturally, 2 men conceived using banked sperm, and 2 women conceived naturally. CONCLUSIONS: Despite the historically poor prognosis of patients with primary brain tumors, there is significant interest in FP among these patients, particularly if they have no prior children. Clinicians should develop strategies to incorporate FP counseling into practice.

Family-building After Breast Cancer: Considering the Effect on Adherence to Adjuvant Endocrine Therapy.

Adherence to endocrine therapy (ET) is a longstanding problem in breast cancer (BC) survivorship care, particularly among younger women. Younger patients have reported lower ET initiation rates and greater rates of early discontinuation and are considered an "at risk" group for nonadherence. For women who hope to have children in the future, concerns about premature menopause and the implications of postponing childbearing for the 5 to 10 years of ET are widespread. Preliminary evidence suggests that prioritizing fertility, along with concerns about side effects, leads to ET noninitiation and early discontinuation. Clinical efforts to improve adherence might need to consider patients' family-building goals during the course of treatment and to appropriately counsel patients according to their priorities and family-building intentions. Educational materials about family building after cancer are still not consistently available or provided. Helping patients to access trusted informational resources and decision support tools, in conjunction with medical counseling, will promote informed decisions regarding ET adherence and pregnancy that are medically appropriate. Such shared patient-provider decision-making about ET adherence and pregnancy could help to maximize patient autonomy by incorporating their values, preferences, and priorities into decisions, using providers' medical expertise.

Evaluating the effectiveness of a radiation safety training intervention for oncology nurses: a pretest-intervention-posttest study.

BACKGROUND: Radiation, for either diagnosis or treatment, is used extensively in the field of oncology. An understanding of oncology radiation safety principles and how to apply them in practice is critical for nursing practice. Misconceptions about radiation are common, resulting in undue fears and concerns that may negatively impact patient care. Effectively educating nurses to help overcome these misconceptions is a challenge. Historically, radiation safety training programs for oncology nurses have been compliance-based and behavioral in philosophy. METHODS: A new radiation safety training initiative was developed for Memorial Sloan-Kettering Cancer Center (MSKCC) adapting elements of current adult education theories to address common misconceptions and to enhance knowledge. A research design for evaluating the revised training program was also developed to assess whether the revised training program resulted in a measurable and/or statistically significant change in the knowledge or attitudes of nurses toward working with radiation. An evaluation research design based on a conceptual framework for measuring knowledge and attitude was developed and implemented using a pretest-intervention-posttest approach for 15% of the study population of 750 inpatient registered oncology nurses. RESULTS: As a result of the intervention program, there was a significant difference in nurse's cognitive knowledge as measured with the test instrument from pretest (58.9%) to posttest (71.6%). The evaluation also demonstrated that while positive nursing attitudes increased, the increase was significant for only 5 out of 9 of the areas evaluated. CONCLUSION: The training intervention was effective for increasing cognitive knowledge, but was less effective at improving overall attitudes. This evaluation provided insights into the effectiveness of training interventions on the radiation safety knowledge and attitude of oncology nurses.

Fertility preservation and cancer: challenges for adolescent and young adult patients.

PURPOSE OF REVIEW: With increasing survival rates, fertility is an important quality of life concern for many young cancer patients. There is a critical need for improvements in clinical care to ensure patients are well informed about infertility risks and fertility preservation options and to support them in their reproductive decision-making prior to treatment. RECENT FINDINGS: Several barriers prevent fertility from being adequately addressed in the clinical context. Providers' and patients' incomplete or inaccurate understanding of infertility risks exacerbate patients' reproductive concerns. For female patients in particular, making decisions about fertility preservation before treatment often leads to decision conflict, reducing the likelihood of making informed, value-based decisions, and posttreatment regret and distress. Recent empirically based interventions to improve provider training around fertility issues and to support patient decision-making about fertility preservation show promise. SUMMARY: Providers should be knowledgeable about the infertility risks associated with cancer therapies and proactively address fertility with all patients who might one day wish to have a child. Comprehensive counseling should also include related issues such as contraceptive use and health implications of early menopause, regardless of desire for future children. Although the negative psychosocial impact of cancer-related infertility is now well accepted, limited work has been done to explore how to improve clinical management of fertility issues in the context of cancer care. Evidence-based interventions should be developed to address barriers and provide psychosocial and decision-making support to patients who are concerned about their fertility and interested in fertility preservation options.

Cancer and Fertility Program Improves Patient Satisfaction With Information Received.

PURPOSE: A cancer and fertility program was established at a large cancer center to support clinicians in discussing treatment-related fertility risks and fertility preservation (FP) options with patients and in referring patients to reproductive specialists. The program provides resources, clinician education, and fertility clinical nurse specialist consultation. This study evaluated the program's impact on patient satisfaction with information received. PATIENTS AND METHODS: Retrospective cross-sectional surveys assessed satisfaction before (cohort 1 [C1]) and after (cohort 2 [C2]) program initiation. Questionnaires were investigator-designed, gender-specific, and anonymous. RESULTS: Most C1 (150 males, 271 females) and C2 (120 males, 320 females) respondents were 2 years postdiagnosis; the most frequently reported cancers were testicular, breast, and lymphoma. A significant difference in satisfaction with the amount of information received was seen between C1 and C2. For males, satisfaction with information on fertility risks was high in both cohorts but significantly greater in C2 for information on sperm banking (χ(2) = 9.3, P = .01) and finding a sperm bank (χ(2) = 13.3, P = .001). For females, satisfaction with information was significantly greater in C2 for information on fertility risks (χ(2) = 62.1, P < .001), FP options (χ(2) = 71.9, P < .001), help with decision making (χ(2) = 80.2, P < .001), and finding a reproductive endocrinologist (χ(2) = 60.5, P < .001). Among patients who received and read information materials, 96% of males and 99% of females found them helpful. Among C2 females, fertility clinical nurse specialist consultation was associated with significantly greater satisfaction with information on FP options (χ(2) = 11.2, P = .004), help with decision making (χ(2) = 10.4, P = .006), and finding a reproductive endocrinologist (χ(2) = 22.6, P < .001), with 10% reporting lack of knowledge as a reason for not pursuing FP. CONCLUSION: Improvements in patient satisfaction with information received demonstrate the potential for fertility programs in cancer care settings to improve the quality of clinician-patient discussions about fertility.

Young Adult Female Cancer Survivors' Decision Regret About Fertility Preservation.

This study evaluated fertility-related experiences of young adult female cancer survivors (18-39 years). Data were from a retrospective, cross-sectional survey. Women were more likely to undergo pre-treatment fertility preservation (FP) if they received fertility counseling (by a fertility nurse specialist, reproductive endocrinologist, or gynecologist). Compared with women who underwent FP, those who did not had greater decision regret (DR) after treatment (p < 0.001). Multiple reasons for not pursuing FP were reported; lack of time and distress related to more DR and not wanting children in the future related to less DR (p < 0.05). Decision regret may lead to psychosocial morbidity in survivorship.

Prospective study of vaginal dilator use adherence and efficacy following radiotherapy.

BACKGROUND AND PURPOSE: Vaginal stenosis (VS) after pelvic radiotherapy (RT) can impair long-term quality of life. We prospectively assessed adherence and efficacy of vaginal dilator (VD) use in women after pelvic RT. MATERIAL AND METHODS: Women with gastrointestinal (n=63) and gynecologic (n=46) cancers self-reported use and VD size in monthly diaries for 12months after radiotherapy. Adherence was measured as actual VD use out of recommended times over 12months (3×/week×52weeks=156). RESULTS: Among 109 participants, aged 28-81years (median, 58years), mean percent adherence over 12months was 42% (95% confidence interval [CI], 36-48%). Adherence was highest in the first quarter (56%), but fell to 25% by the fourth. Disease type, treatment sequence, and chemotherapy were predictors of adherence (all P<.05). Eighty-two percent maintained pre-RT VD size at 12months; of 49% with a decrease in VD size at 1month post-RT, 71% returned to pre-RT VD size at 12months. Disease type, younger age, and increased adherence at 6months were associated with maintaining or returning to pre-RT size at 12months (all P⩽.05). CONCLUSION: VD use is effective in minimizing VS, but adherence at 12months was poor. Studies evaluating methods of improving adherence and determining the optimal frequency and duration of use are needed.

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.