Search

Individuals diagnosed with cancer as adolescents and young adults (AYAs; ages 15-39 years) face unique vulnerabilities. Compared with individuals diagnosed when younger (≤14 years) or older (≥40 years), AYAs have not seen the same improvement in survival. Furthermore, they sit at a complex moment of social, emotional, and cognitive development, and have a unique interface with the healthcare system. With these observations, NCI prioritized addressing the unique vulnerabilities among AYAs with cancer, and NCCN developed guidelines regarding optimal AYA cancer care. Improvements in certain locales have been seen in the wake of this focus on AYAs, suggesting that continuing to consider AYA outcomes in the context of their specific needs is critical as we strive toward additional improvements. However, it is key to consider the drivers of these outcomes to continue this trajectory. This review presents a holistic conceptual model that includes factors that influence outcomes among AYAs with cancer, including domains in these levels that influence both clinical outcomes (such as relapse and survival) and health-related quality of life (HRQoL). These include domains at the patient level, such as social constructs (race/ethnicity, socioeconomic status), behavior (adherence, risk-taking), biologic characteristics (cancer biology, host genetics), medical treatment (treatment regimen, risk-based survivorship care), and treatment-related toxicities. The model also includes domains at the system level, which include treatment location (NCI designation, facility model, AYA program presence), clinical trial enrollment, transdisciplinary communication, fertility preservation, and psychosocial support. Recognizing these multiple factors at the level of the individual and the healthcare system influence AYA outcomes (from HRQoL to survival), it is key not only to consider patient-level interventions and development of novel cancer agents but also to develop systems-level interventions that can be executed in parallel. In this way, the impact can be expanded to a vast number of AYAs.

Purpose: Often cited barriers to fertility preservation (FP) among female adolescent and young adult (AYA) cancer patients include cost and time. We hypothesized that oncologists overestimate the time and costs required for female FP. Methods: We distributed an electronic survey to physicians in oncology-related departments. The survey assessed the knowledge and utilization of gonadotoxic therapies, FP options and requirements, and FP referral patterns. Student's t , Fisher's exact, ANOVA, and Wilcoxon signed-rank tests were used for continuous variables as appropriate; the chi-squared test was used for categorical variables. Results: Among respondents who reported prescribing gonadotoxic agents to AYAs ( n  = 38), 79% reported often / always discussing FP options, while only half referred to a reproductive specialist often / always . A smaller proportion of pediatric oncologists discussed FP often / always ( p  = 0.04) and most referred <25% of patients to a reproductive specialist; however, the majority of other specialists referred ≥75% of patients to a reproductive specialist ( p  = 0.001). While most respondents accurately estimated the time required to complete FP, the majority overestimated the cost of an FP procedure. Knowledge of FP options was inconsistent, with 63.2% reporting that suppression of the hypothalamic-pituitary-ovarian-axis is an option for FP, with 82.6% of these classifying it as standard of care. Conclusions: With variation across specialties, most oncology specialists prescribing gonadotoxic therapies for AYA females discuss FP, while a smaller proportion refer patients for FP. Despite relative accuracy in estimating the time required for FP, they overestimate costs of FP. Educational curricula related to FP are necessary across oncology specialties, especially pediatric oncology.

PURPOSE Individuals diagnosed with cancer age between 15 and 39 years (adolescents and young adults [AYAs]) have not seen improvement in survival compared with children or older adults; clinical trial accrual correlates with survival. Unique unmet needs among AYAs related to psychosocial support and fertility preservation (FP) are associated with health-related quality of life. METHODS We enhanced existing structures and leveraged faculty/staff across pediatric/adult oncology to create novel teams focused on AYA (age 15-39 years) care at a single center, with minimal dedicated staff and no change to revenue streams. We aimed to influence domains shown to drive survival and health-related quality of life: clinical trial enrollment, physician/staff collaboration, psychosocial support, and FP. We captured metrics 3 months after patients presented to the institution and compared them before/after Program implementation using descriptive statistics. RESULTS Among 139 AYAs (age 15-39 years) from the pre-Program era (January 2016-February 2019: adult, n 5 79; pediatric, n 5 60), and 279 from the post-Program era (February 2019-March 2022: adult, n 5 215; pediatric, n 5 64), there was no change in clinical trial enrollment(P $ .3), whereas there was an increase in the proportion of AYAs referred for supportive care and psychology (pediatric: P # .02; adult: P # .001); whose oncologists discussed FP (pediatric: 15% v 52%, P, .0001; adult: 37% v 50%, P 5 .0004); and undergoing FP consults (pediatric: 8% v39%, P, .0001; adult 23% v 38%, P 5 .02). CONCLUSION This team-based framework has effected change in most targeted domains. To affect all domains and design optimal interventions, it is crucial to understand patient-level and facility-level barriers/facilitators to FP and clinical trial enrollment. [ABSTRACT FROM AUTHOR]

Adolescents receiving myelosuppressive cancer treatment are at high risk of abnormal uterine bleeding (AUB) in the setting of thrombocytopenia. There are no validated menstrual suppression regimens in this setting, and clinical management is based on studies in healthy women. There has been minimal evaluation of patterns of care in this population. We established a retrospective cohort of patients who were aged 15-39y at diagnosis with new or relapsed lymphoma, acute myeloid leukemia, or sarcoma and treated with chemotherapy +/- radiation at a single tertiary pediatric institution between 2008-2019. Our aim was to understand patterns of care by describing patient characteristics and symptoms (packed red blood cell and/or platelet transfusions). The following was abstracted from the medical record: cancer diagnosis, chemotherapy, clinical characteristics, race/ethnicity, payor, menarchal age, menstrual pattern prior to therapy, and cycle control agents utilized. IRB approval was obtained. Our cohort included 52 patients, the majority of whom were newly diagnosed (73%) and received highly myelosuppressive chemotherapy (85%). The majority of patient records had no documentation of menstrual cycles (81%) or sexual history (89%). A minority of records documented discussion of potential therapy-related infertility (30%) or fertility preservation options (11%); all fertility preservation options discussed were accurate. Eighty-five percent of patients received blood product transfusions. The majority of patients (79%) were prescribed hormonal agents for menstrual suppression; the most utilized agents were depo-medroxyprogesterone (49%) and combined oral contraceptives (39%). The initiation of a menstrual suppression agent varied from prior to (20%), simultaneous with (25%), or after initiating (44%) chemotherapy (Table 1). Despite AUB being a likely consequence for adolescents receiving myelosuppressive therapies, not all at-risk patients were prescribed menstrual suppression. Agents prescribed and timing of initiation varied widely. The majority of patients received blood products. The majority of patients did not have relevant gynecologic details documented by oncologists. Our study is limited by small sample size and being from a single institution. Ongoing work is evaluating these patterns in a larger cohort, aiming to understand differences in symptomatic AUB and healthcare utilization according to cycle control agents, along with the impact of AUB on adolescent quality of life. [ABSTRACT FROM AUTHOR]