Journal of Adolescent and Young Adult Oncology

Purpose: Few studies have specifically targeted symptom management interventions for adolescent and young adult (AYA) cancer survivors. A greater understanding of AYA cancer survivors' experiences with cancer treatment-related symptoms would help develop age-appropriate oncology symptom management interventions. The purpose of this qualitative analysis was to explore AYA cancer survivors' experience with cancer treatment-related symptoms. Methods: Nineteen post-treatment AYA cancer survivors (18-39 years old) who self-reported moderate-severe cancer treatment-related symptom severity participated in video conferencing or telephone interviews...

Data on gonadotoxicity of chemotherapies are essential to better counsel young females and males about the risk of infertility and to better indicate fertility preservation measures before cancer therapies. However, such data have not recently been reviewed for bone cancer. Therefore, a systematic literature search was conducted considering papers published since 2000. This study is part of the FertiTOX® project, which aims to improve the lack of data regarding gonadotoxicity of cancer therapies to enable more accurate counseling regarding fertility preservation...

Purpose: Oncology clinicians are appropriately positioned to facilitate discussions of assisted reproductive technologies including preimplantation genetic testing for monogenic disease (PGT-M), in the context of cancer treatment or surveillance. Yet, reproductive services, including PGT-M, remain one of the least implemented services in oncology. No studies to date have explored which practice resources the clinicians need to increase knowledge of PGT-M. The objective of this study was to explore the specific needs of oncology clinicians to help maximize the reproductive potential of young adult patients with hereditary cancers...

Purpose: Although fertility preservation for patients with childhood and adolescent cancer is considered standard of care in the high-resource settings, it is rarely offered in low-resource settings. This study explores the experiences and perspectives of oncology health care professionals in Uganda to identify contextual barriers and facilitators to addressing oncofertility in low-resource settings. Methods: Using ground theory, we conducted in-depth face-to-face interviews of health care professionals managing pediatric patients at the Uganda Cancer Institute (UCI)...

Purpose: We investigated the health-related quality of life (HRQoL) of an adolescent and young adult (AYA)-aged South African childhood cancer survivor (CCS) cohort. Methods: Participants completed the Minneapolis-Manchester Quality of Life adolescent and adult forms. The overall Cronbach's alpha coefficients were 0.81 (adolescent form) and 0.92 (adult form). The scale-level content validity indexes were acceptable (0.88 and 0.89 for the adolescent and adult forms, respectively). The total domain and overall HRQoL scores were calculated...

Purpose: Social anxiety disorder (SAD) remains an understudied potential link between the cancer experience and adolescent and young adult (AYA) cancer survivors' poor psychosocial outcomes. We investigated the frequency and duration of, as well as factors associated with, symptoms of SAD among AYAs with cancer. Methods: This longitudinal, mixed-methods study involved online surveys (including a validated screening tool for SAD) at recruitment and 6 months later, and a structured clinical interview. Results: Twenty-eight AYAs (aged 12-30 years, <1-year postdiagnosis, 50% male) completed the first survey ( M  = 6 months postdiagnosis)...

Purpose: Assessing patient and guardian experiences regarding their history of ovarian tissue cryopreservation (OTC) years after initial procedure. Methods: Cross-sectional follow-up telephone survey. A questionnaire developed by The Pediatric Initiative Network of the Oncofertility Consortium, modified to assess intent and attitudes regarding OTC, tissue access knowledge, financial burden of tissue storage, and intent to use tissue, was utilized. Interviews were conducted for those who underwent OTC at a metropolitan children's hospital between 2013 and 2022...

Female survivors of young adult (YA) cancers are at risk of fertility impacts following cancer treatment. For these women, fertility-related distress is both prevalent and persistent. Yet there is little research regarding survivors' perspectives on alternative family-building options, particularly adoption. This exploratory secondary data analysis analyzed semistructured interviews and explored survivors' views of adoption. Overall, female YA survivors reported openness to adoption as a possible substitute for biological conception and an alternative to fertility preservation...

Undifferentiated embryonal sarcoma of the liver (UESL) is an extremely rare and aggressive malignancy in adults.1 Adults with UESL have a worse prognosis compared to pediatric population.2 Due to the rarity of this disease in adults, there has been a lack of information that assists in treatment decisions within this group. Improved understanding of UESL in adults might assist in understanding biological differences compared to pediatric cohorts as well as tailor treatments to improve their overall outcome...

Purpose: This study aimed to explore the experiences of young adult cancer patients within the Tunisian context. Methods: A total of 104 patients between the ages of 20 and 40, undergoing treatment for various types and stages of cancer, participated in a questionnaire-based survey. The survey encompassed topics related to the socioeconomic and psychological impacts of cancer, coping mechanisms, relationships, sexuality, and future aspirations. Results: Of the participants, 78 were women (75%) and 26 were men (25%), with an average age of 33 years...

Purpose: Reproductive health (RH) is a critical issue among cancer survivors worldwide. However, in developing countries where RH services for patients with cancer are often lacking, reproductive concerns among adolescent and young adult (AYA) survivors remain uncertain. In this study, we assessed the reproductive concerns of AYA cancer survivors in a resource-limited context of Uganda. Methods: We collected data from AYA cancer survivors at two facilities in Uganda using an interviewer-administered questionnaire...

Purpose: To investigate the role of formal reproductive endocrinology and infertility (REI) consultation in fertility preservation counseling in a pediatric/adolescent oncology patient population. Methods: Retrospective chart review was performed at an academic adult hospital from 2021 to 2022. Pre- and postpubertal patients admitted to the pediatric/adolescent oncology service with cancer diagnoses and imminent gonadotoxic chemotherapy plans were included. Baseline characteristics were collected, including patient age, sex, race, language, insurance, and cancer diagnosis...

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Purpose: This study addresses the critical issue of fertility preservation among young patients with cancer in Japan, recognizing the brief decision-making window and the need for comprehensive support. Pharmacists, well-versed in the side effects of anticancer drugs, can play a vital role in this support process. However, the extent of pharmacists' involvement in fertility preservation remains unclear. We aimed to investigate pharmacists' roles in addressing cancer treatment-induced fertility concerns and their collaboration with physicians, offering insights into enhancing pharmacist participation in fertility preservation...

Background: Despite being considered a key component of quality-of-life, sexual health concerns in adolescents and young adults (AYA) patients with cancer (aged 15-39 years old) are often unmet due to barriers from both patients and health care professionals (HCPs). Investigation into policy and practice tools in this scope of practice is also limited. Aim: To review the literature on policy and practice tools in AYA oncosexology. Method: A scoping review was conducted using four databases: Medline, EMCARE, EMBASE , and PsycINFO , based on the Joanna Briggs Institute Scoping Review methodology...

Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information...

Children with cancer in low- and middle-income countries were disproportionately impacted by the COVID-19 pandemic, but little is known about how adolescents and young adults (AYAs) with cancer were affected. Sixty-seven physicians and nonphysician providers were interviewed about their experiences caring for AYAs with cancer in Latin America. Quotes related to the COVID-19 pandemic were identified and grouped into themes. Barriers from the COVID-19 pandemic included limited space, restrictions on travel, reduced funding, limited staff, limited services, and changes to treatment...

Background: The financial burden resulting from cancers on families is higher when it arises in young people compared with older adults. Previous research has provided insight into the financial toxicities associated with childhood cancer, but less is known about the efficacy of financial aid systems in reducing the financial burden on families. We conducted a scoping review to identify the determinants of success and failure of financial aid. Methods: Five databases were searched for articles published between January 1, 2000 and December 1, 2022...

This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors ( n  = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling ( β  = -0.20, p  = 0.04), perceived consequences of cancer-related fertility changes ( β  = 0.26, p  = 0.03), and understanding of one's reproductive health ( β  = -0...

Purpose: We sought to evaluate physicians' baseline knowledge of fertility preservation services available to patients with a cancer diagnosis within the military health system (MHS). Methods: Data on current cancer prevalence of over 31,000 unique cancer diagnoses were obtained from a comprehensive nationwide MHS dataset. Additionally, a 22-item survey was distributed to physicians practicing within the MHS assessing knowledge of reproductive health benefits, oncofertility counseling practices, and subspecialist referral patterns...