Journal of Adolescent and Young Adult Oncology

A Study on the Timing of Resumption of Menstruation After Interruption/Termination of GnRH Agonist Therapy in Premenopausal Breast Cancer Patients
Takei K, Huang H, Sato H, Kashiwabara S, Samejima K, Matsunaga S and Takai Y
In hormone therapy for premenopausal breast cancer (BC), gonadotropin-releasing hormone (GnRH) agonist (GnRHa) formulations, especially long-acting formulations, are often used in combination with tamoxifen (TAM). On the other hand, in recent years, endocrine therapy is increasingly interrupted to achieve pregnancy. Here, we examined ovarian function and the timing of resumption of menstruation after the interruption of GnRHa therapy. Fertility preservation patients with BC who visited our hospital between January 2010 and August 2023 and who interrupted endocrine therapy with a GnRHa formulation were included. Information on 22 cases (24 cycles), including two interruptions due to the desire for a second child, was collected from medical records and examined retrospectively. Three cases started assisted reproductive technology treatments before menstruation resumed and were excluded from the analysis. Menstruation resumed at approximately 7, 9, and 12 months from the last dose of the 1-, 3-, and 6-month GnRHa formulations, respectively. The long delay of menstruation resumption was presumably caused by the use of (1) the 3-month formulation in the 6 months before the last GnRHa dose, (2) the 6-month formulation in the 12 months before the last dose, and (3) TAM when menstruation resumed. In BC patients who may seek pregnancy after interrupting endocrine therapy, it may be easier to estimate the timing of resumption of menstruation if the use of long-term GnRHa depot formulations is avoided for >6 months before the interruption. BC endocrine therapy should be optimized to achieve pregnancy and childbirth as soon as possible during its interruption.
Clinical Characteristics of Adolescent and Young Adult Patients Undergoing Pancreatectomy for Malignant Tumors: A 20-Year Single Institution Experience
Kawakubo N, Esaki M, Nara S, Miyata A, Mizui T, Umino R, Takemoto J, Hishiki T and Yoneda A
Adolescent and young adult (AYA) patients who require pancreatectomy are rare. There are few reports concerning the characteristics of AYA patients undergoing pancreatectomy for malignant tumors. This study aimed to clarify the characteristics and outcomes of AYA patients who had undergone pancreatectomy. AYA patients (age 15-35 years) who underwent pancreatectomy at our institution between 1995 and 2018 were included in this study. The diagnosis, operative procedure, complications, mortality, and survival were retrospectively analyzed. Forty-seven patients underwent pancreatectomy (median age 29 years; range, 16-35 years). The diagnoses were solid-pseudopapillary neoplasm (SPN; = 21 [44.6%]), neuroendocrine neoplasm (NEN; = 12 [25.5%]), adenocarcinoma ( = 5 [10.6%]), and others ( = 9 [19.1%]). The surgical procedures included pancreatoduodenectomy (PD; = 17 [36.1%]), distal pancreatectomy (DP; = 18 [38.2%]), middle pancreatectomy ( = 8 [17.0%]), and tumor enucleation ( = 4 [8.5%]). The most common postoperative complication was pancreatic fistula (POPF) ( = 29 [61.7%]). Hemorrhage was noted in one case, but the surgical mortality rate was 0%. Long-term complications included four cases of pancreatitis, three cases of diabetes, two cases of bowel obstruction, and one case of cholangitis. The 5-year recurrence-free-survival (RFS) and overall-survival (OS) rates in patients with SPN/NEN/others were 91.8% and 97.5%, respectively. In contrast, the 5-year RFS and OS rates in patients with adenocarcinoma were 53.3% and 80.0%, respectively. Most AYA patients who underwent pancreatectomy had low-grade malignancies and showed a favorable survival. Although POPF and pancreatitis frequently occur, radical surgery-even major pancreatectomy such as PD and DP-is feasible and effective in AYA patients with malignant tumors.
Health Disparities and Special Considerations for Adolescents and Young Adults (AYA) with Cancer
Mittal N
Screening and Needs Assessments in Adolescent and Young Adult Oncology
Haines E, Salsman JM, Meredith C, Bunch SC and Sanford S
Implementing a User-Centered Design to Develop a Web-Based Sperm Banking Decision Tool for Adolescent Males with Cancer
Griffith MM, Sezgin E, Karkare T, Roche CI, English J, Audino A, Montgomery KE, Saraf AJ, Quinn GP, Housten AJ, Scherer M, Scherer M and Nahata L
Approximately half of male childhood cancer survivors experience treatment-related fertility impairment. Regrets about missed sperm banking opportunities have been reported, yet few decision tools for male adolescents with cancer exist. This study aims to report the development, testing, and adaptation of the Family-centered Adolescent Sperm banking values clarification Tool (FAST) using an iterative, user-centered design with male adolescents with cancer and their caregivers and to obtain feedback from clinicians and community partners. Males (12-25 years, diagnosed with cancer in the past year, received a routine fertility consult where sperm banking was offered) and caregivers completed the FAST on a screen-recorded device, a semi-structured interview, the System Usability Scale (SUS), and a sociodemographic questionnaire. Feedback informed FAST adaptations and was documented using the Framework for Reporting Adaptations and Modifications-Expanded. Descriptive statistics and thematic analysis characterized FAST completion information. Ten families (16 caregivers, 9 adolescents) enrolled. Themes included: ease of navigation, perceived usefulness of the FAST, and perspectives on tool adaptations. Forty-three FAST adaptations were made in response to participant feedback. Median FAST completion time was 5 minutes and 37 seconds. The mean FAST SUS score was high at 84.60 (minimum = 57.50, maximum = 100, standard deviation = 11.08). Applying an iterative, user-centered approach, the FAST was developed, usability-tested, and adapted to a web-based format that families found easy to navigate and useful. Web-based tools, such as the FAST, could improve the sperm banking decision-making process for adolescent males and their caregivers by addressing unmet needs and ultimately improving satisfaction with fertility counseling outcomes.
Fertility and Sexual Health in the Adolescent and Young Adult Oncology Population
Yeager ND and Bjornard KL
Palliative Care in Adolescent and Young Adult Oncology: Guidelines and Resources for Care
Levine DR, Steineck A, Heidelberg RE and Spraker-Perlman H
Working in This Field and Living in This Field: The Importance of Cancer Survivors in the Professional Setting
Topalian A, Baldwin E and Panagiotou V
Disrupted Independence-Supporting Adolescents and Young Adults with Sarcoma in Maintaining Autonomy: A Qualitative Study
Venkataraman V, Merriman B, Revette A, Nava-Coulter B, George S, Shulman DS and Greenzang KA
Adolescents and young adults (AYAs; 15-39 years) with sarcoma undergo intensive therapies during a vulnerable time in their lives. We aimed to characterize the unmet needs of AYAs with sarcoma to inform strategies that improve outcomes. We used purposive sampling to conduct semistructured focus groups of AYAs with sarcoma treated primarily at Dana-Farber Cancer Institute. Focus groups were conducted via Zoom by trained moderators and focused on experiences with treatment, decision-making, care communication, supportive care services, and the effects of cancer on daily life. Focus groups were audio recorded, transcribed, and thematically analyzed via a team-based approach. We conducted four focus groups with 20 participants (16-34 years) adolescents, emerging adults, young adults, and those with recurrent/metastatic disease. Participants confirmed that sarcoma and its treatment affected their physical, emotional, social, and economic health. We identified three key overarching themes: (1) Disruption to agency and mobility negatively impacted well-being and social relations; (2) The transition from "active treatment" to "surveillance" was fraught as it often magnified challenges of "returning to normal" and loss of autonomy; and (3) Additional supports and services may help address identified unmet needs and gaps in care. Participants expressed a desire for support services to be introduced earlier to help facilitate independence. AYAs with sarcoma experience loss of agency, mobility, and impaired well-being due to their diagnoses and treatments. They desire early introduction of supportive services, and care teams can proactively address these challenges by connecting patients with targeted services, resources, tools, and community.
Social Genomic Mechanisms of Health Disparities Among Adolescent/Young Adult Survivors of Hodgkin and Non-Hodgkin Lymphoma: ECOG-ACRIN E
Zebrack B, Duan F, Cole S, Gareen I, Prasad P, Sicks J, Cheung C, Evens A, Ghazal L, Dinner S, Duvall A, Parsons SK, Salsman J, Kahl B, Simon M and Wagner L
Adolescent and Young Adult Cancer Patient Characteristics and Palliative Care Trends in an Asian Tertiary Cancer Center
Poh YK, Wong SYG, Goh DL, Ke Y and Wong VHM
Adolescent and young adult oncology patients represent a unique group with complex needs, yet data on palliative care utilization remain scarce in the Asian population. The definition of this group remains heterogeneous across organizations, and it is unclear whether extending the age range beyond conventional cutoffs affects observed patterns of care. We conducted a retrospective cohort study to describe palliative care utilization and end-of-life outcomes among oncology patients aged 16-45 years at a tertiary cancer center in Singapore. Oncology patients aged 16-45 referred to the palliative team from 2011 to 2021 were identified using institutional databases. Chi-square tests and sensitivity analysis were used to compare outcomes across age groups. The timing of last treatment relative to palliative referral was described. Multivariable logistic regression was performed to identify predictors of aggressive care. Median age was 37 years; 58.8% were female; 83.6% of patients were deceased at the time of study. There was a trend toward earlier referrals in recent years, including during the COVID-19 pandemic. Outcomes including cause of death, place of death, rates of early/late referral, and aggressive care did not differ significantly across age groups. Timing of referral was the key independent factor associated with poor end-of-life outcomes including aggressive treatment. Referral patterns and end-of-life care intensity are consistent across ages through 45 years. Late palliative referrals were associated with higher usage of aggressive treatment and death in hospital. Findings support integrated, timely access to palliative care in this group and validate flexibility in the definition of age ranges.
Feasibility of Symptom Burden Assessments and Early Palliative Care Integration in an Adolescent and Young Adult Leukemia Clinic
Monick SE, Hanson C, Hoehn KS, Hlubocky FJ, Stock W, Duvall A, McNeer J, Henderson T, Daugherty C and Wang AY
Adolescents and young adults (AYA; ages 15-39) with acute leukemia have significant unmet supportive care needs. This pilot study integrated same-day palliative care (PC) into an AYA leukemia clinic, measuring symptom burden (SB) with validated symptom assessment tools at baseline, 3, and 6 months. Among 31 patients, moderate-severe symptoms included tiredness, anxiety, and poor appetite. AYAs experienced high SB and psychological distress, regardless of care phase or sociodemographics. With PC integration, tiredness and depression improved significantly; no symptoms worsened. Half of the PC visits led to management changes. Early integration of symptom-focused PC was feasible, value-adding, and well-received by patients.
Survivorship Services for Adolescents and Young Adults: Barriers and Facilitators to Meeting Clinical Practice Guidelines
Devine KA, Mulrooney DA, Whiteside S and Yu C
Understanding Guidelines and Navigating Barriers to Comprehensive Oncology Care: A Multidisciplinary Meeting to Review of Evidence-Based Practices and Resources for Adolescent and Young Adults
Daniels S, Bishop M and Crabtree V
Advancing Research for Adolescents and Young Adults Cancer: A Position Statement
Zhang A, Dixon S, Willard VW and Bleyer A
Treatment Adherence and Self-Management in Adolescent and Young Adult Oncology
McGrady ME, Tillery Webster R and Wolfson JA
Recommendations for Psychosocial Care in Adolescent and Young Adult Oncology
Barnett M, Hinton T, Daniels S, Pozo-Kaderman C, Haluska H, Little M and Wiener L
Incidence and Characteristics of Psychiatric Disorders in Adolescent and Young Adult Patients with Malignant Brain Tumors
Yi ES, Kim Y, Cho C, Kim J, Noh OK and Park JE
Adolescents and young adults (AYAs) with brain tumors are at an increased risk of developing psychiatric disorders. We aimed to investigate the incidence and characteristics of psychiatric disorders in AYA patients with brain tumors. Using the Korean Classification of Diseases, we identified a cohort of AYA patients (aged 15-34 years) diagnosed with malignant brain neoplasms (C71) between 2003 and 2016 from the Korean National Health Insurance Claims Database. The analysis included 7052 patients. The 10-year cumulative incidence rate of psychiatric disorders was 21.5%. The most common psychiatric disorders were neurotic, stress-related, and somatoform disorders (11.4%), followed by mood (affective) disorders (9.4%). Factors associated with a higher incidence of psychiatric disorders included female sex (hazard ratio [HR] 1.16, 95% confidence interval [CI]: 1.05-1.28, = 0.005), history of seizures (HR: 1.47, 95% CI: 1.31-1.66, < 0.001), and brain tumor diagnosis during the latter part of the study period (HR: 1.14, 95% CI: 1.03-1.27, = 0.010). Psychiatric hospital admissions were most frequent among patients with schizophrenia, schizotypal disorders, and delusional disorders ( = 5). The most common psychiatric disorders requiring psychotherapy were neurotic, stress-related, and somatoform ( = 580) and mood ( = 526) disorders. A significant number of AYA patients with brain tumors develop psychiatric disorders after diagnosis, and most require treatment. Early detection through screening programs and personalized psychological support during and after cancer treatment may improve the mental health and quality of life of AYA patients with brain tumors.
Awareness and Education Needs in Adolescent and Young Adult Oncology
Blair T and Daniels S
"Why Would You Say That? That Is the Worst Thing You Could Possibly Say": Communication Work Among Young Breast Cancer Survivors
Miller LE
Communication is a salient aspect of coping with cancer. Research suggests that young adult cancer survivors may experience unique challenges, including social isolation, fertility and family planning concerns, dating and marriage, and financial challenges. Little is known, however, about the types of communicative work young breast cancer survivors face. A total of 25 young breast cancer survivors between the ages of 18 and 39 participated in semi-structured interviews. The average age of the participants at the time of diagnosis was 34 (range = 26-39 years). Constant comparative analytic methods revealed themes relating to the types of communication work participants experienced. Communication work was common among the participants. Specifically, the data revealed various types of communication work, including information work, relational work, emotion work, identity work, and coordination work. Communicative work persisted throughout breast cancer survivorship. Breast cancer survivors' loved ones should be cognizant of such challenges to promote empathic conversations across the cancer trajectory.
Digital Tools Used to Enhance the Quality of Life and Well-Being of Adolescent and Young Adult Cancer Survivors: A Systematic Review of the Literature
Bertrand A, Escot N, Girodet M, Congiusta T, Baudry AS, Demoor C and Christophe V
The number of adolescent and young adult cancer survivors (AYACSs) is increasing due to advancements in therapies. Despite these improvements, 70% of survivors experience long-term side effects. This systematic review aims to identify digital tools that enhance the quality of life and well-being of AYACSs aged 15-29 years. The review was conducted using four databases: PubMed, Science Direct, Cochrane, and PsycINFO (OVID platform). Articles from bibliographic references of selected studies were also included if relevant. The search followed Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines and included studies published between January 2014 and December 2024 that described digital tools focusing on quality of life and/or well-being. Titles and abstracts were independently assessed by two reviewers, with a third reviewer resolving disagreements. The initial search identified 291 articles, updated in December 2024. After screening, 285 articles were excluded for not meeting the inclusion criteria. Three studies met the criteria, focusing on interventions related to information dissemination, physical activity, and psychological support. These studies, conducted in the United States and Australia between 2015 and 2024, included randomized controlled trials with measured outcomes related to quality of life and/or well-being. The findings suggest that digital tools can improve the quality of life of AYACSs, particularly through peer interaction and personalized content. However, the limited number of studies and participants highlights the need for further research. The review also discusses challenges in involving AYACSs in digital programs and suggests optimizing digital tools by promoting peer links, integrating social networks, and considering self-determination theory.