Journal of Adolescent and Young Adult Oncology

Purpose: To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. Methods: As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making. Results: One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males)...

Recent estimates suggest that the lower middle income countries in Asia carry the heaviest burden of cancer among adolescents and young adults (AYAs) (defined as age 15-39 years). A larger proportion of the population in Asia is aged 15-39 compared with the developed countries. This age group is different from the pediatric or the adult group in terms of physical, social, psychological, and financial needs. Cancer incidence, disability, survivorship needs, financial toxicity, psychosocial issues, and so on are underestimated in this group, and available literature is scarce...

Purpose: Adolescents and young adult (AYA) cancer survivors (15-39 years at diagnosis) are at risk for treatment-related late effects but face barriers in accessing survivorship care. We examined the prevalence of five health care access (HCA) barriers: affordability, accessibility, availability, accommodation, and acceptability. Methods: We identified AYA survivors from the University of North Carolina (UNC) Cancer Survivorship Cohort who completed a baseline questionnaire in 2010-2016. Participants had a history of cancer, were ≥18 years of age, and receiving care at a UNC oncology clinic...

Purpose: To identify and evaluate patient-reported outcome measures (PROMs) for assessing survivorship-related concepts for adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors. Methods: We searched five electronic databases. Two researchers independently screened all titles for inclusion and used consensus-based standards for the selection of health measurement instruments (COSMIN) guidance to grade the quality of evidence for each measurement property. Results: Four studies met eligibility criteria: single-item pain thermometer; single-item fatigue thermometer; 37-item pediatric functional assessment of cancer therapy-brain tumor survivors, measuring quality of life; and 12-item Perceived Barriers Scale to assess barriers to employment...

Purpose: To explore Allied Health Professionals' (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15-39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis...

Purpose: To examine the factors associated with females attending a fertility consultation within 30 days of cancer diagnosis. Methods: This is a retrospective cohort study, including females, 15 to 39 years of age, diagnosed with cancer in Ontario, Canada. Administrative data were used from the Institute of Clinical and Evaluative Sciences for the period 2006 to 2019. A backward selection multivariate logistic regression was performed, with a primary outcome of fertility consultation within 30 days of diagnosis...

Purpose: When a cancer diagnosis coincides with caring for children, it may influence the financial impacts of cancer and decisions to pursue advance care planning (ACP) or genetic testing. We examined associations between caring for children and financial hardship, ACP, and genetic testing among female adolescent and young adult (AYA) cancer survivors in North Carolina and California. Methods: Participants were diagnosed at ages 15-39 years with breast, melanoma, gynecologic, lymphoma, or thyroid cancer during 2004-2016...

Purpose: Social media can facilitate peer support among young adults with cancer; however, information is needed about what social media are used, by whom, and how to inform resource and intervention recommendations. Methods: In December 2021, we conducted an online survey with 396 young adults with cancer, ages 18-39, with any diagnosis ages 15-39. Participants reported their social media use to connect with other young adults with cancer, including frequency of use, type of support, and affect (positive to negative) when using to connect with cancer peers...

Purpose: Although adolescent and young adult (AYA) cancer patients are digital natives and have high digital communication needs, previous studies of screening tools for AYAs have primarily used paper when measuring patient-reported outcomes (PROs). There are no reports on using an electronic PRO (ePRO) screening tool with AYAs. This study evaluated the feasibility of such a tool in clinical settings, and assessed the prevalence of AYAs' distress and supportive care needs. Methods: An ePRO tool based on the Distress Thermometer and Problem List (DTPL)-Japanese (DTPL-J) version for AYAs was implemented in a clinical setting for 3 months...

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants ( n  = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians ( n  = 118) were recruited nationally by health care professionals...

Purpose: Fertility preservation (FP) and family building are important considerations for quality survivorship for young cancer patients. Resident physicians across all specialties encounter reproductive-aged cancer patients. The purpose of this study was to assess resident physicians' attitudes and awareness about FP with the goal to identify specific educational gaps to direct future training. Methods: The Institutional Review Board (IRB)-approved anonymous online survey was sent to resident physicians across specialties at three separate academic-affiliated campuses in one state...

Purpose: Oncofertility counseling of female cancer patients lacks efficient access to tailored and valid infertility risk estimates to support shared decision-making on fertility preservation treatments. The objective was to develop, conduct user-centered design, and plan clinic-based implementation of the Cancer Related Infertility Score Predictor (CRISP), a web-based tool to support infertility risk counseling. Methods: Using a mixed methods design, literature review was undertaken to abstract data on infertility, primary ovarian insufficiency, and amenorrhea risks of common cancer treatments...

Purpose: Studies reported that early diagnosis, treatment, and prevention of cervical cancer are influenced by knowledge, beliefs, and attitude toward screening. This descriptive-comparative study aimed to assess human papilloma virus (HPV) knowledge, attitudes, and beliefs in university students and the affecting factors and to compare between Turkish and Ghanaian students. Methods: The sample consists of 933 university students studying in 4 different faculties in 2 universities from Turkey and Ghana. The data were collected between November 2019 and February 2020...

Purpose: Cancer-related cognitive deficits (CRCDs) are common among young adults (YAs) (ages: 18-39) with cancer and can be debilitating. We aimed to determine the feasibility and acceptability of a virtual Coping with Brain Fog intervention among YAs with cancer. Our secondary aims were to explore the intervention's effect on cognitive functioning and psychological distress. Methods: This prospective feasibility study involved eight weekly, 90-minute virtual group sessions. Sessions focused on psychoeducation on CRCD, memory skills, task management, and psychological well-being...

Purpose: Recently, direct communication with children about cancer seems to have shifted, but little is known about communication regarding discussions of future infertility risk due to cancer therapy. This study conducted cross-cultural comparisons between Japan and the United States to clarify communication patterns about cancer notification and develop appropriate information about fertility issues. Methods: An online survey was distributed to members of the Japanese Society of Pediatric Hematology/Oncology in July 2019 and the American Society of Pediatric Hematology/Oncology in July 2020...

The primary purpose of this scoping review was to provide an overview of the existing evidence on the delivery of palliative and end-of-life care to adolescents and young adults (AYAs) living with cancer, by identifying knowledge gaps and discussing the key characteristics and types of evidence in this field. This study employed a JBI scoping review design. CINAHL (EBSCO), Embase (Elsevier), MEDLINE (Ovid), APA PsycINFO (EBSCO), and Web of Science (Science Citation Index Expanded and Social Sciences Citation Index; Clarivate Analytics) databases were searched along with grey literature sources to February 2022 for related studies on the delivery of palliative and end-of-life care for AYAs...

Introduction: There is a lack of metrics to monitor and evaluate fertility care in adolescents and young adults with cancer. This study evaluated the indicator "proportion of cases attending a fertility consult visit ≤30 days from diagnosis of cancer" using the National Quality Forum (NQF) criteria. Methods: This was a retrospective cohort study using administrative data available through the Institute of Clinical Evaluative Sciences in Ontario, Canada. Cases were included if they were diagnosed with a cancer between January 2005 and December 2019, and aged 15-39 years...

Purpose: Every year, nearly 100,000 adolescents and young adults (15-39 years, AYAs) are diagnosed with cancer in the United States and many have unmet physical, psychosocial, and practical needs during and after cancer treatment. In response to demands for improved cancer care delivery for this population, specialized AYA cancer programs have emerged across the country. However, cancer centers face multilevel barriers to developing and implementing AYA cancer programs and would benefit from more robust guidance on how to approach AYA program development...

Background: Adolescents and young adult (AYA) patients with sarcoma are at heightened risk of reduced physical capacity and disease-related weakness. Sit-to-stand (STS) performance correlates with lower extremity functionality and activities of daily living; however, little is known regarding the relationship between muscular status and STS performance in patients with sarcoma. This study assessed STS performance in patients with sarcoma and the association between STS performance and the skeletal muscle index (SMI) and skeletal muscle density (SMD)...

Adolescents and young adults with cancer (AYACs) have become recognized as a unique group in recent years. The unique developmental context and related challenges of being a young person with a cancer diagnosis can lead to a distinct and diverse set of psychosocial issues. Existing research has attempted to explore these psychosocial needs and challenges and to develop appropriate and individualized interventions. However, the needs of this group remain unmet, with ongoing calls for individualized support. This systematic review addressed the research question, "what are the psychosocial needs of AYACs aged 15-24 years?...