Treatment for childhood solid tumors may lead to an increased risk for gonadal dysfunction/infertility. Discussion of risk should occur at diagnosis, any changes in therapy, and during survivorship. Gonadotoxic therapies were abstracted from 32 Children’s Oncology Group (COG) phase III, frontline solid tumor protocols, in use from 2000-2022. Risk for gonadal dysfunction/infertility was assessed based on gonadotoxic therapies, sex, and pubertal status and assigned as minimal, significant, and high following the Oncofertility Consortium Pediatric Initiative Network (PIN) risk stratification. Most protocols (65.6%, 21/32) contained at least one therapeutic arm with a high level of increased risk. Solid tumor therapies present challenges in risk stratification due to response-adjusted therapy and the need to account for radiation field in the risk assessment. This guide hopes to serve as a tool to assist in standardizing gonadotoxic risk assessments across disciplines and improve referral for fertility services and reproductive health counseling for patients receiving COG based solid tumor therapy.

Background There are sparse data on long-term and late effects of hematopoietic cell transplantation (HCT) for sickle cell disease (SCD) Objectives To establish an international registry of long-term outcomes post-HCT for SCD and demonstrate the feasibility of recruitment at a single site in the US. Methods The STELLAR registry is designed to enroll SCD patients ≥ 1-year post-HCT, their siblings without SCD, and non-transplanted SCD controls to collect participant self-report of health status and practices using the BMT survivor study surveys, HRQOL using PROMIS 25 or 29, cGVHD using the symptom scale survey, daily pain using an electronic pain diary, economic impact of HCT using the financial hardship survey, and sexual function using PROMIS SexFSv2.0. We also piloted retrieval of clinical data previously submitted to CIBMTR, recorded demographics, height, weight, BP, hip and waist circumference, timed-up-and-go, and handgrip test, and obtained blood for metabolic screening, gonadal function, fertility potential, and biorepository of plasma, serum, RNA, and DNA. Results Among 100 eligible post-HCT patients, we enrolled 72 participants 9-38 (median 17) years age. We also enrolled 19 siblings 5-32 (median10)years age and 28 non-transplanted SCD controls 4-46 (median 22) years age. Of 119 participants, 73 completed 85 sets of surveys and 41 contributed samples to the biorepository. We successfully piloted retrieval of data submitted to CIBMTR and expanded recruitment to seven US, Canada, UK, and Nigeria sites. Conclusions It is feasible to recruit subjects and conduct study procedures for the STELLAR registry of long-term and late effects of HCT for SCD.

Background: Childhood cancer survivors need regular, long-term survivor care. The Children’s Oncology Group (COG) recommends that pediatric cancer patients receive ongoing, evidence-based surveillance for late-effects beginning two years after cancer therapy completion. A third of survivors are not engaging in long-term survivorship care. This study assessed barriers and facilitators to follow-up survivorship care through the perspectives of pediatric cancer clinic representatives. Methods: As part of a hybrid implementation-effectiveness trial, a representative from 12 participating pediatric cancer survivor clinics completed a survey about site characteristics, and a semi-structured interview on barriers and facilitators to survivor care delivery at their institution. Interviews were grounded in the socio-ecological model (SEM) framework and utilized a Fishbone diagram to identify the root causes of a problem. We ran descriptive statistics and conducted thematic analyses of the interview transcripts to create two meta-Fishbone diagrams. Results: Participating clinics (n=12) have existed for at least five years (mean=30, range= 5-97), and half (50%) report seeing 100-200 survivors annually. In the Fishbone diagram, top facilitators were in the SEM domain of Organization, specifically with familiar staff (100%), resource utilization (92%), survivorship-exclusive staff (83%), and clinic processes (83%). Common barriers were in the domains of Organization, Community, and Policy which included technology limits (92%), scheduling issues (92%), insufficient funding/insurance (92%), and distance/transportation (100%). Conclusion: Using the Fishbone diagram was instrumental in understanding multilevel contextual issues related to survivor care delivery for pediatric cancer clinics. Future efforts can develop education, processes, and services to promote cancer follow-up care.

In the survivorship setting, adolescent and young adult (AYA) cancer survivors frequently demonstrate little knowledge of infertility risk, are unclear regarding their fertility status and may under- or over-estimate their treatment-related risk for infertility. In female AYA survivors, ovarian function usually parallels fertility, and can be assessed with serum hormone levels and ultrasonography. Post-treatment fertility preservation may be appropriate for survivors at risk for primary ovarian insufficiency. In male AYA survivors, fertility and gonadal function are not always equally affected, and can be assessed with a semen analysis and serum hormones, respectively. As reproductive health issues are commonly cited as an important concern by survivors of AYA cancer, multidisciplinary care teams including oncology, endocrinology, psychology, and reproductive medicine are advocated, with the aim of optimal provision of fertility advice and care for AYA cancer survivors.