Examining decisional needs and contextual factors influencing fertility status assessment among young female survivors of childhood cancer: A sequential mixed methods study protocol.

INTRODUCTION: Female cancer survivors who received gonadotoxic cancer treatment are at risk for profound diminished ovarian reserve and/or primary ovarian insufficiency with resulting infertility, which can be associated with distress and decreased quality of life.. Despite prioritizing future parenthood, many survivors are unsure of the impact of their treatment on their future fertility, and little is known about the perceived reproductive health needs and factors associated with receipt of a fertility status assessment (FSA). There is a lack of developmentally appropriate reproductive health decisional support interventions available for emerging adult cancer survivors. This study will explore the perceived reproductive health needs of emerging adult female survivors of childhood cancer and to identify decisional and contextual factors that influence pursuit of FSA using an explanatory sequential quantitative to qualitative mixed methods design. METHODS AND ANALYSIS: This study will enroll 325 female survivors (aged 18 to 29 years and >1-year post treatment; diagnosed with cancer < age 21 years) from four cancer centers in the United States. Sociodemographic and developmental factors, reproductive knowledge and values, decisional needs, and receipt of an FSA will be assessed through a web-based survey. Informed by survey findings, a subset of participants will be recruited for qualitative interviews to explore decisional factors associated with uptake of an FSA. Clinical data will be abstracted from the medical records. Multivariable logistic regression models will be developed to identify factors associated with FSA and qualitative descriptive analysis will be used to develop themes from the interviews. Quantitative and qualitative findings will be merged using a joint display to develop integrated study conclusions and direct future interventional research.

Female reproductive health in pediatric, adolescent, and young adult cancer survivors.

An estimated 500,000 cancer survivors of reproductive age in the United States will live to experience the long-term consequences of cancer treatment. Therefore, a focused aspect of cancer care has appropriately shifted to include quality of life in survivorship. Infertility is a late effect of therapy that affects 12% of female survivors of childhood cancer receiving any cancer treatment in large cohort studies and results in a 40% decreased likelihood of pregnancy in young adults of ages 18-39 years. Nonfertility gynecologic late effects such as hypoestrogenism, radiation-induced uterine and vaginal injury, genital graft-versus-host disease after hematopoietic stem cell transplant, and sexual dysfunction also significantly affect quality of life in survivorship but are underdiagnosed and require consideration. Several articles in the special edition "Reproductive Health in Adolescent and Young Adult Cancer Survivorship" address infertility, genital graft-versus-host disease, and psychosexual functioning in survivorship. This review article focuses on other adverse gynecologic outcomes of cancer therapies including hypogonadism and hormone replacement therapy, radiation-induced uterovaginal injury, vaccination and contraception, breast and cervical cancer screening, and pregnancy considerations in survivorship.

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

Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effective interventions for fertility preservation across institutions. As part of the PanCareLIFE Consortium, and in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in female patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. This clinical practice guideline leverages existing evidence and international expertise to develop transparent recommendations that are easy to use to facilitate the care of female patients with childhood, adolescent, and young adult cancer who are at high risk for fertility impairment. A complete review of the existing evidence, including a quality assessment, transparent reporting of the guideline panel's decisions, and achievement of global interdisciplinary consensus, is an important result of this intensive collaboration.

Pediatric and Young Adult Vulvovaginal Graft-versus-Host Disease.

Vulvovaginal graft-versus-host disease (GVHD) is an underdiagnosed and poorly recognized complication of hematopoietic stem cell transplantation (HSCT). Previous studies have reported findings restricted to predominantly adult populations. We report a case series of pediatric and young adult vulvovaginal GVHD, which was identified in 19 patients (median age, 11.8 years; range, 2.4 to 21.9 years) out of a total 302 female patients who underwent transplantation over an 8-year period at a pediatric HSCT center. The majority of patients had concomitant nongenital GVHD; only 1 patient had isolated vulvovaginal GVHD. The median time from bone marrow transplantation to diagnosis of vulvovaginal GVHD was 30 months (range, 2.3 to 97.5 months). A high percentage of the patients in our series were without vulvar or vaginal symptoms (n = 8; 42%), even though 17 patients (89%) presented with grade 3 disease based on current adult grading scales. Vulvar examination findings most frequently included interlabial and clitoral hood adhesions (89%), loss of architecture of the labia minora or clitoral hood (42%), and skin erosions or fissures (37%). Only 5 patients underwent a speculum exam, none of whom had vaginal GVHD. Examination findings of primary ovarian insufficiency (POI) can overlap with those of GVHD, and 6 patients (32%) in our cohort were diagnosed with POI. Only 1 patient was on systemic hormone replacement therapy at the time of vulvovaginal GVHD diagnosis. The majority of patients (n = 16) were treated with topical steroid therapy, with a median time to response of 43 days. Five patients (26%) had a complete response to therapy, and 10 patients (53%) had a partial response. This case series provides valuable insight into pediatric and young adult vulvovaginal GVHD and highlights the need for increased screening for vulvar disease in this population.

Development of a Pediatric Fertility Preservation Program: A Report From the Pediatric Initiative Network of the Oncofertility Consortium.

Infertility is known to decrease quality of life among adults. In some cases, infertility is caused by medical conditions and/or treatments prescribed in childhood, and using methods to protect or preserve fertility may expand future reproductive possibilities. Structured programs to offer counseling about infertility risk and fertility preservation options are essential in the care of pediatric patients facing fertility-threatening conditions or treatments, yet multiple barriers to program development exist. This report was developed from the institutional experiences of members of the Pediatric Initiative Network of the Oncofertility Consortium, with the intent of providing guidance for health care providers aiming to establish programs at institutions lacking pediatric fertility preservation services. The mechanics of building a fertility preservation program are discussed, including essential team members, target populations, fertility preservation options (both established and experimental), survivorship issues, research opportunities, and ethical considerations. Common barriers to program development and utilization, including low referral rates and financial concerns, are also discussed, and recommendations made for overcoming such barriers.

Surgical Management of Benign Adnexal Masses in the Pediatric/Adolescent Population: An 11-Year Review.

STUDY OBJECTIVE: The purpose of this study was to compare ovarian conservation rates and surgical approach in benign adnexal surgeries performed by surgeons vs gynecologists at a tertiary care institution. DESIGN: A retrospective cohort review. SETTING: Children's and adult tertiary care university-based hospital. PARTICIPANTS: Patients 21 years of age and younger who underwent surgery for an adnexal mass from January 2003 through December 2013. INTERVENTIONS: Patient age, demographic characteristics, menarchal status, clinical symptoms, radiologic imaging, timing of surgery, surgeon specialty, mode of surgery, rate of ovarian conservation, and pathology were recorded. Patients were excluded if they had a uterine anomaly or pathology-proven malignancy. MAIN OUTCOME MEASURES: The primary outcome was the rate of ovarian conservation relative to surgical specialty; secondary outcome was surgical approach relative to surgical specialty. RESULTS: Of 310 potential cases, 194 met inclusion criteria. Gynecologists were more likely than surgeons to conserve the ovary (80% vs 63%; odds ratio, 2.28; 95% confidence interval, 1.16-4.48). After adjusting for age, body mass index, mass size, and urgency of surgery, the difference was attenuated (adjusted odds ratio, 1.84; 95% confidence interval, 0.88-3.84). Surgeons and gynecologists performed minimally invasive surgery at similar rates (62% vs 50%; P = .11). A patient was more likely to receive surgery by a gynecologist if she was older (P < .001) and postmenarchal (P = .005). CONCLUSION: Results of our study suggest that gynecologists are more likely to perform ovarian-conserving surgery. However, our sample size precluded precise estimates in our multivariable model. Educational efforts among all pediatric and gynecologic surgeons should emphasize ovarian conservation and fertility preservation whenever possible.

Invasive Ductal Carcinoma in a 46,XY Partial Androgen Insensitivity Syndrome Patient on Hormone Therapy.

BACKGROUND: The hormonal management of patients with androgen insensitivity can be challenging. CASE: An illustrative case is presented of a newborn with ambiguous genitalia who was raised female. She was diagnosed as 46,XY Disorder of Sexual Development with partial androgen insensitivity. To induce puberty, conjugated equine estrogens were administered beginning at age 12. At age 13, she instead began taking combined oral contraceptives for maternal concerns about height and continued taking them for social reasons. Invasive ductal carcinoma was diagnosed at age 27, and the patient was treated with chemotherapy, radiation therapy, bilateral mastectomies, and endocrine therapy. SUMMARY AND CONCLUSION: The current literature is reviewed, and hormonal management and other risks for breast cancer are discussed.

Rope swing injuries resulting in vulvar trauma.

BACKGROUND: River tree rope swings are popular for recreation along inland lakes and rivers, but not without hazard. In a comprehensive review of injuries related to rope swings, genital injuries accounted for nearly 3 percent. CASE: We describe significant genital injuries, with laceration and avulsion of the labia and a large vulvar hematoma in 2 young women as a consequence of rope swing use. SUMMARY AND CONCLUSIONS: Visitors to inland waterways need to be cognizant of the hazards of rope swings and health care professionals should consider this mechanism of injury when confronted with vulvar trauma.