Search

Purpose: A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives. Methods: Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation. Results: Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19-29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face "my cancer" in my way, and (3) I feel that I would be okay with "my cancer." Conclusions: AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs' experiences to appropriately support them to successfully proceed further.

This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances ( n = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.

Purpose: The main objective of this study was to identify the facilitators of and barriers to the transition from pediatric to adult care for adolescents and young adults (AYAs) with cancer according to physicians and nurses working in oncology. The secondary objectives were (1) to explore the viewpoints of health care professionals (HCPs) on this transition and (2) to discover HCP's needs and the needs they perceive among AYAs and their parents. Methods: Semistructured interviews were conducted with 19 HCPs to discover their experiences with pediatric to adult care transitions. Thematic analysis was then conducted. Results: Participants reported that transitioning is a complex process influenced by numerous barriers and facilitators, which can be classified into four themes: (1) balancing the needs and relationships of the three actors involved in the transition process, (2) factors that enable HCPs to determine the ideal time for transitions, (3) institutional and organizational barriers and facilitators that challenge HCPs, and (4) HCPs' reflections on defining and improving the transition process. Conclusion: Beyond the lack of human and financial resources, which hinders the structuring of transitions, our results suggest the need for a paradigm shift. That is, the position given to AYAs in pediatrics before the transition needs to evolve so that they are gradually positioned at the center of the relationship with HCPs and, therefore, are the focus of care and the transition process. This will enable them to acquire the skills, knowledge, and autonomy needed for a successful transition to adult care.

Limited guidance exists on streamlining cancer therapy for adolescent and young adult (AYA) patients 15-39 years of age, as much of the current data are extrapolated from pediatric or adult counterparts and can differ significantly between the two care models. Harmonization of standard treatment approaches has the potential to improve outcomes and establish a foundation for the development of future clinical trials. We present our experience harmonizing treatment and supportive care regimens for AYA patients with osteosarcoma receiving treatment with methotrexate, doxorubicin, and cisplatin (MAP) therapy on the pediatric and adult sarcoma services at the Memorial Sloan Kettering Cancer Center.

Physical activity (PA) may minimize long-term and late effects experienced by cancer survivors. However, the efficacy of PA interventions in increasing PA engagement among adolescent and young adult (AYA) cancer survivors diagnosed between 15 and 39 is not well understood. This systematic review aimed to examine the effects of moderate- to high-intensity or strength training PA interventions on PA engagement in AYA cancer survivors. Secondary aims included describing intervention components unique to efficacious interventions, identifying symptom management in PA interventions, and evaluating intervention effects on quality of life (QoL), and long-term or late effects of cancer. We searched PubMed, CINAHL, PsycINFO, SportDiscus, Cochrane Library, and Scopus databases from inception to August 2022 and identified 12 articles, including 8 randomized controlled trials and 4 quasi-experimental studies. The effect of PA interventions on PA engagement was mixed, with four studies reporting increases in PA engagement ranging from 18.4 to 113.8 min/week postintervention. There was great diversity in PA intervention components. Motivational interviewing, supervised and unsupervised PA sessions together, moderate-intensity PA only, and mindful meditation were components unique to efficacious interventions. No intervention incorporated symptom management components. Studies provided some evidence of PA interventions on potential long-term effects of cancer, with positive impact on fatigue, and some evidence of improved anxiety, sleep, and QoL. Given limited research with AYA cancer survivors, additional research is needed to identify effective intervention components, integrate symptom management strategies into PA interventions, and track effects of PA interventions on late and long-term effects of cancer in this population.

Purpose: While there are known disparities in socioeconomic status (SES) and health outcomes among racially and ethnically minoritized adolescent and young adult (AYA; ages 15-39 years at diagnosis) cancer survivors compared with White survivors, outcomes in the Asian survivor population are understudied. To better understand the association of an AYA cancer diagnosis with SES and health outcomes within a minoritized population, the current study makes comparisons between individuals of the same race or ethnicity with and without a history of AYA cancer. Methods: Non-Hispanic, Asian AYA cancer survivors and non-Hispanic, Asian age- and sex-matched controls were identified from self-reported data in the National Health Interview Survey (2009-2020). Prevalence of chronic health conditions and socioeconomic factors were compared between groups using chi-square tests. Odds of chronic conditions by SES factors were determined within and between survivors and controls using logistic regression methods. Results: One hundred and thirty-one survivors and 1310 controls were included. Survivors were less likely to be married compared with controls; however, there were no differences in other SES factors examined. Survivors had higher odds of at least one chronic condition diagnosis (odds ratio = 4.17, p  < 0.001) compared with controls. Of the chronic conditions assessed, survivors had higher odds of arthritis, pulmonary disease, and hypertension compared with controls. Conclusions: Asian AYA cancer survivors are at increased risk of chronic health conditions compared with Asian individuals without a cancer history. Culturally adapted targeted interventions are needed to improve health outcomes for this population.

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. To determine the prevalence of distress and need for supportive care, descriptive statistics were calculated for participant characteristics, selected items, and Distress Thermometer (DT) scores. Response rates, referral rates to an attending physician and other experts, and time required to complete PRO tools were assessed to evaluate feasibility. Results: From February to April 2022, 244 (93.8%) of 260 AYAs completed the ePRO tool based on the DTPL-J for AYAs. Based on a DT cutoff of ≥5, 65 of 244 patients (26.6%) had high distress. Worry ( n  = 81, 33.2%) was the most frequently selected item. Primary nurses referred 85 (32.7%) patients to an attending physician or other experts. The referral rate resulting from ePRO screening was significantly higher than that after PRO screening ( χ 2 (1) = 17.99, p  < 0.001). The average response time did not differ significantly between ePRO and PRO screening ( p  = 0.252). Conclusion: This study suggests the feasibility of an ePRO tool based on the DTPL-J for AYAs.

Purpose: Adolescent and young adult (AYA) patients with cancer have few opportunities to connect with patients of the same generation while hospitalized. Although anxiety is frequently reported by them, there are no reports on the psychological effectiveness of an in-hospital patient support program based on peer support. This study aimed to evaluate the effectiveness of a program, termed Adolescent and Young Adult Hiroba (AYA Hiroba), for anxiety in AYA patients with cancer. Methods: This single-center, prospective, observational study in 24 AYA patients with cancer was conducted at the National Cancer Center Hospital in Japan. The Hospital Anxiety and Depression Scale-Anxiety (HADS-A) was used to evaluate the primary outcome, anxiety. The Distress Thermometer (DT) was used to evaluate the secondary outcome, distress. The two outcomes were assessed before and after participation in AYA Hiroba. The Net Promoter Score (NPS) was used to evaluate satisfaction after participation in AYA Hiroba. Participants' free-text descriptions of the program were categorized according to similarities and differences. Results: The HADS-A and DT scores were significantly lower after the program than before ( p  < 0.001), as was the percentage of AYA patients with cancer with high distress ( p  = 0.04). The NPS was 27, which was lower than the value of 52 obtained in our previous study. Requests and suggestions to improve the program were grouped into three categories: content, facilitation, and online connection environment. Conclusion: This study suggests the preliminary effectiveness of the in-hospital peer support program for anxiety in AYA patients with cancer. The Clinical Trial Registration number: UMIN000045779.

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. The Perceived Barrier Scale showed high-quality evidence for internal consistency and moderate quality evidence for construct and structural validity. Evidence for the measurement properties of the other PROMs was low-to-moderate quality. Conclusion: We found one PROM with sufficient evidence for good measurement properties to support its use. This warrants development and evaluation of further PROMs to inform ongoing supportive care for this population. Implications for Cancer Survivors: The Perceived Barriers Scale is sufficiently validated and could be considered to guide support for AYA survivors of CNS tumors to achieve their employment goals.

This study explored (1) health care provider (HCP) perceived barriers and facilitators to social media communication about sexual health with adolescent and young adult survivors, and (2) strategies that can help HCPs navigate social media use for this purpose. Thematic analysis of 11 semistructured HCP interviews resulted in four themes and suggests that social media platforms offer a promising avenue to foster sexual health communication but that resources and training are needed to improve HCP capacity to use this approach ethically and effectively. Future studies are needed to determine specific communication strategies and whether these strategies would lead to improved outcomes.

Childhood cancer survivors are recommended to have lifelong survivorship care, yet many become disengaged during pediatric to adult care transitions. We implemented a pilot clinic for adult survivors of pediatric or adolescent and young adult (AYA) leukemia transitioning to adult-focused survivorship care. The clinic featured AYA-specific care, bidirectional communication with primary care, and a quality improvement (QI) cycle. During the 1-year QI period, 27 patients were seen and 21 completed postvisit interviews. The clinic was positively received by patients and primary care providers, showed promise for improving self-management and care coordination, and highlighted the need for novel approaches to connect survivors with primary care.

The transition from pediatric to adult care poses several emotional and personal challenges to adolescents and young adult (AYA) childhood cancer survivors (CCSs), which need attention to avoid the risk of nonadherence and medical dropout. This brief report describes the condition of AYA-CCSs at the moment of transition in terms of emotional state, personal autonomy, and expectations regarding future care. The results provide insights for clinicians dealing with survivorship care, to enhance AYA-CCSs emotional resilience and to support them in being in charge of their health, thus facilitating their transition to adulthood.

Adolescent young adult (AYA) cancer survivors continue to have substantive unmet needs. Literature and insights from a task force of survivors, caregivers, and survivor advocates convened by Servier Pharmaceuticals indicate desires for peer created and provided support. This secondary data analysis of information from the task force identified unmet needs in five domains and solutions explored for four prioritized needs. Ultimately, four actionable solution concepts were selected by the task force for further development. Through their work, many key insights about including survivors in creating solutions and the many approaches for best serving AYAs with cancer were revealed.

Purpose: Synovial sarcoma (SS) is a rare, high-grade soft tissue tumor that requires multidisciplinary and multimodal care with surgery, radiotherapy, and chemotherapy. We examined the impact of sociodemographic and clinical factors on treatment patterns and survival in localized SS patients. Methods: Adolescents and young adults (AYAs, 15-39 years) and older adults ("adults," ≥40 years) diagnosed with localized SS from 2000 to 2018 were identified in the California Cancer Registry. Multivariable logistic regression identified clinical and sociodemographic factors associated with receipt of chemotherapy and/or radiotherapy. Cox proportional hazards regression identified factors associated with overall survival (OS). Results are reported as odds ratios (ORs) and hazard ratios (HRs), respectively, with 95% confidence intervals (CIs). Results: More AYAs ( n  = 346) than adults ( n  = 272) received chemotherapy (47.7% vs. 36.4%) and radiotherapy (62.1% vs. 58.1%). Age at diagnosis, tumor size, treatment at National Cancer Institute-Children's Oncology Group (NCI-COG)-designated facilities, insurance status, and neighborhood socioeconomic status (SES) influenced treatment patterns. Among AYAs, treatment at NCI-COG-designated facilities was associated with receiving chemotherapy (OR 2.74, CI 1.48-5.07) and low SES was associated with worse OS (HR 2.28, 1.09-4.77). In adults, high SES was associated with receiving chemoradiotherapy (OR 3.20, CI 1.40-7.31), whereas public insurance was associated with decreased odds of chemoradiotherapy (OR 0.44, CI 0.20-0.95). With regard to treatment, absence of radiotherapy (HR 1.94, CI 1.18-3.20) was associated with worse OS in adults. Conclusion: In localized SS, both clinical and sociodemographic factors influenced treatment patterns. Further research should investigate how SES-related factors produce treatment disparities and identify interventions to improve treatment equity and outcomes.

Purpose: Financial concern is a major issue for adolescent and young adult (AYA) cancer patients. Furthermore, unaddressed oncofertility challenges (e.g., infertility) are linked to psychological distress and decreased overall quality of life. Little is known about how financial concern in terms of oncofertility (i.e., concern regarding affording fertility preservation [FP] services) impacts AYAs' decision making and experiences. Methods: AYA cancer patients ( n  = 27) aged 12-25 years whose cancer treatment conferred risk of infertility were recruited through electronic health record query. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to financial concern were identified. The Institutional Review Board at the University of Michigan approved this study (HUM#00157267). Results: Financial concern was a dominant theme across the qualitative data. Emergent themes included (1) varied access to health insurance, (2) presence of parental/guardian support, (3) reliance upon financial aid, (4) negotiating infertility risk, and (5) lack of preparation for long-term costs. AYAs relied heavily upon parents for out-of-pocket and insurance coverage support. Some participants sought financial aid when guided by providers. Several participants indicated that no financial support existed for their circumstance. Conclusions: Financial consequences in terms of oncofertility are a major issue affecting AYA cancer patients. The incidence and gravity of financial concern surrounding affording oncofertility services merits attention in future research (measuring financial resources of AYAs' parental/support networks), clinical practice (strategically addressing short- and long-term costs; tailored psychosocial support), and health care policy (promoting legislation to mandate pre- and post-treatment FP coverage).

Introduction: Adolescent and young adult (AYA) cancer patients report low health insurance literacy. We interviewed AYAs to gain their perspectives on the content and delivery of the Huntsman-Intermountain adolescent and young adult cancer health insurance (HIAYA CHAT) program. Methods: From October 2019 to March 2020, we interviewed N  = 24 insured AYAs with cancer aged 18-39 years. Participants were recruited by study staff and social media. We elicited feedback on proposed HIAYA CHAT content including insurance terms/definitions, insurance coverage components, insurance legislation, cost management, and the suitability of the intervention delivery. Interviews were audio recorded, transcribed, and inductively analyzed using NVivo 12. We coded feedback into three categories of results: (1) delivery of HIAYA CHAT, (2) endorsements of proposed HIAYA CHAT content, and (3) recommendations to expand and improve HIAYA CHAT. Results: Participants were 58% female, 79% non-Hispanic white, and 79% receiving cancer treatment. First, AYAs felt that three to four different content areas, each 30 minutes or less, seemed feasible and that delivery should be through an online platform. Second, participants reflected on times during their treatment when having more insurance knowledge (e.g., appeals process) would have been useful, endorsing content about insurance policies, legal protections, and legislative impacts on health care costs. Third, AYAs recommended evaluating patients' health insurance literacy before starting HIAYA CHAT and wanted concrete learning tools (e.g., sample medical bills and budgeting). Conclusion: AYAs with cancer wanted health insurance education to include information about insurance policies and protections using tangible examples through an online delivery. Describing AYAs preferences for interventions may improve relevance and efficacy of the program. Clinical Trial Registration: ClinicalTrials.gov Identifier: NCT04448678.

Purpose: Adolescents and young adults (AYA) who undergo cancer treatment sometimes report posttraumatic growth (PTG). Although the importance of peer support has been suggested, its association with PTG, especially its five distinct domains, needs to be investigated further in AYA cancer survivors. The present study examined the role of demographics and peer support in PTG among AYA cancer patients and survivors. Methods: The present, multicenter, cross-sectional, web-based study enrolled AYA cancer patients and survivors (median age: 28 years). Of 549 AYA patients recruited, 212 from 11 cancer centers and 12 cancer patient communities agreed to participate by completing a self-reported measure of PTG (Extended Version of the Posttraumatic Growth Inventory-Japanese) and providing information about their diagnosis, treatment, peer support (affiliation with an AYA patient community or friendship with other AYA patients), and social status. Multiple regression analysis was used to identify significant correlations overall and in the five PTG domains. Results: PTG was positively associated with male sex, having a confidant, and friendship with other AYA patients, and negatively associated with cranial radiation. Friendship with other AYA patients was positively associated with four of the five PTG subscales. For the five subscale scores, "cranial radiation" was negatively associated with "relating to others"; "belonging to a religion" was positively associated with "spiritual change"; and "having a confidant" was positively associated with "relating to others" and "new possibility." Conclusion: "Having a confidant" and "friendship with other AYA patients" were positively associated with PTG. Psychosocial interventions mobilizing peer support may contribute to promoting PTG in AYA patients. UMIN000035439.

Purpose: Adolescents and young adults with cancer have lower college attendance and graduation rates than their peers, but the reasons for this and extent to which cancer impacts college is unknown. This study explores post-high school experiences of young adults with cancer, detailing impacts of diagnosis and treatment on higher education attainment. Materials and Methods: A convergent mixed-methods design disseminated nationally obtained data regarding post-high school transition experiences in adults diagnosed with cancer before age 25. Results: Participants ( n  = 47) indicated struggles with employment and education; 81% attended some college, but 44% have not completed their degree, citing logistic challenges and lasting effects of therapy as major barriers. Nearly 20% of participants reported that cancer made higher education too difficult, so they did not attend, and most of these individuals (66.6%) are unemployed. Qualitative findings detail that accessing appropriate accommodations was made difficult by a lack of understanding from college faculty and staff. Conclusion: For many, cancer presents a barrier to higher education attainment; changing course of studies, repeating classes, and switching majors may impact degree completion. A minority of students with cancer access educational supports or get assistance obtaining these resources from their medical or high school team. Changes to clinical practice to ensure supports for young adults transitioning from high school have the potential to create improved pathways to higher education success. Additionally, supporting college faculty and staff understanding of cancer and its late effects may be a low-cost, high-impact way to improve adolescent/young adult college success.

Purpose: Several studies have investigated good communication practices with adult patients receiving bad news about cancer. However, while communication preferences may differ between adults and adolescent and young adult (AYA) patients, these preferences have not been determined for AYA patients. The primary endpoint of this study was to describe the communication preferred by AYA patients with cancer. Methods: The study cohort consisted of 15 patients who received a cancer diagnosis at the age of 15-29 years. Patients were recruited at the National Cancer Center Hospital or through "STAND UP!!," an association of AYA patients with cancer. Semistructured interviews were conducted, and content analysis was performed to analyze the data. Results: For the preferred communication of AYA patients, 80 categories were extracted in the following five domains: (1) "Supportive setting," (2) "Method of disclosure of bad news," (3) "Information given," (4) "Emotional support," and (5) "Support for the patient's decision making." Although more than half of the categories extracted were identical to the preferred communication of adult patients, some categories specific to AYA patients were identified that physicians should consider. Preferences specific to AYA patients included mentioning generation-specific social factors, not showing excessive empathy, and communicating in a manner considering their age and cognitive development that supports their decision making. Conclusion: Although physicians should be mindful of the specific preferences of AYA patients, the basic attitude and communication preferences are similar to those of patients of other generations.

Purpose: Fertility preservation (FP) is becoming increasingly common among child, adolescent, and young-adult (CAYA) patients with cancer. However, Japan has long lacked definite estimates of utilization rates for FP services among CAYA patients with cancer, and little is known about disease/FP outcomes among users. Therefore, the Japan Society for Fertility Preservation (JSFP) launched the Japan Oncofertility Registry (JOFR) in 2018 and started the online registration of information regarding primary disease, FP, and data on prognosis and pregnancy outcomes. This study reports the analytical results of FP data registered in the JOFR as of 2021. Methods: Data about patients' primary disease(s), treatment courses, cancer and pregnancy outcomes, and specific procedures were extracted from the JOFR and analyzed. Results: In 2021, 1244 patients received counseling or treatment related to FP (540 males, 704 females). While the numbers of males in each age group were approximately equal, most females were aged between 31 and 40 years. In total, 490 male and 540 female patients underwent FP procedures. Leukemia, testicular cancer, and malignant lymphoma accounted for the majority of male cases seeking treatment, whereas breast cancer was the primary disease in two-thirds of the females. Since 1999, 395 patients have accumulatively experienced subsequent pregnancy. Conclusions: As of January 2022, >7000 cases from >100 fertility facilities have been registered in the JOFR. In the future, maintaining JOFR to disseminate information on cancer prognoses, pregnancy rates, and other oncofertility outcomes is expected to drive further expansion of oncofertility services in Japan.

Purpose: Although participation of adolescents and young adults (AYAs) in cancer clinical trials (CCTs, i.e., cancer-directed treatment studies) is low, their decision-making perspectives are not well understood, especially following recent diagnosis. Methods: Semistructured interviews with younger AYAs (15-21 years old) eligible for a CCT were to be held within 60 days of beginning treatment at Children's Hospital Los Angeles, an academic pediatric hospital. Using grounded theory methods, key themes regarding CCT participation, barriers, and facilitators were identified from interview transcripts. Thematic saturation was confirmed. Results: Of nine participants, three were <18 years old, four Hispanic, six male, six diagnosed with leukemia, eight enrolled in a CCT, and eight also enrolled in ancillary studies. Four overarching themes emerged: (1) Initial Consent encompassed the first discussion of CCT with patients reflecting positive and negative effects of timing, decisional role, and the emotional impact following cancer diagnosis; (2) Informing Participation involved decision-making processes, specific knowledge, comprehension, and external influences; (3) Participant Relationships emphasized the importance of communication and relationships with providers and parents; and (4) Patient Determinants centered on motives from different perspectives, pre-conceived attitudes, and understanding of CCTs. Conclusion: Recommendations for improving CCT participation among younger AYAs include separating the diagnosis/treatment and CCT discussions, assigning AYAs a meaningful decisional role, having ongoing provider conversations, designing trials to minimize burden, and developing age-appropriate decision aids.

There are two purposes to this study. The first purpose was to develop a communication skills training (CST) program for oncologists working with adolescents and young adults (AYA-CST). The second purpose was to evaluate the program's feasibility. The online AYA-CST program was a half-day workshop including a didactic lecture, role-playing with simulated patients and discussions in a small group. All six oncologists who participated in the program satisfactorily completed it. Our AYA-CST program seems feasible and will be tested further in a randomized control study.

Purpose: Fertility is a major concern for adolescents and young adults (AYAs, 15-30 years) diagnosed with cancer, yet they often report a lack of information and understanding about fertility impacts and preservation options. This study aimed to evaluate the acceptability and preliminary efficacy of Maybe Later Baby (MLB), an oncofertility information resource for AYAs diagnosed with cancer. Methods: In a randomized controlled trial, 13 participants received MLB alone and 10 received an augmented intervention involving an additional consultation with a health care professional (HCP). Pre- and postintervention surveys and interviews explored participants' well-being, fertility knowledge, health literacy, and experiences using the resource. Results: Participants indicated that the resource was accessible and understandable and provided valuable information without increasing distress. When averaged across conditions, functional health literacy ( p  = 0.006) and oncofertility knowledge ( p  = 0.002) increased, although there were no significant changes in fertility-related emotions ( p  > 0.05), and quality of life decreased ( p  = 0.014). While qualitative accounts suggested that HCP consultations were useful and validated participants' experiences and concerns, participants receiving the augmented intervention became more nervous/fearful about fertility treatment ( p  = 0.005). There were no other differences in outcomes between conditions. Conclusions: Young people diagnosed with cancer want and value information about oncofertility and resources such as MLB are acceptable and useful means of providing this information. This could be supplemented by clinical discussion to ensure that tailored situation-specific information is provided and understood and patient distress is appropriately managed. Clinical Trial Registration number: 12615000624583.

Purpose: Studies have shown that financial toxicity can reduce survival, decrease quality of life, and reduce compliance with treatments. The aim of this retrospective study was to investigate material markers of financial toxicity, including insurance coverage, financial assistance, and balances due among adolescent and young adult (AYA) (18-39), adult (40-64), and senior adult (>65) patients with a sarcoma diagnosis after the Affordable Care Act became effective. Methods: This study performed a retrospective analysis of possible indicators within the material domain of financial toxicity in sarcoma patients, a common diagnosis in young adult patients. Indicators of financial toxicity included: insurance status and number of insurances, charity care, accessing financing options, or having an unpaid balance referred to a collection's agency. Results: The cumulative charges per patient were similar between AYA, adult, and senior adult populations at an average of $194,329 (standard deviation [SD] = $321,425), $236,724 (SD = $368,345), and $188,030 (SD = $271,191), respectively. AYA patients were more likely than adult and senior adult patients to have Medicaid coverage (income-based government insurance) (22.1% vs. 8.4% vs. 1.2%), receive charity care (5.3% vs. 2.6% vs. 1.2%), or have a balance referred to a collection's agency (9.2% vs. 5.8% vs. 1.2%). Conclusions: This study suggests that younger cancer patients are more likely to suffer material financial strain and additional financial resources may need to be made available to ensure they can receive care without an increase of financial toxicity markers and undue financial stress.

Purpose: This study was designed to assess the most salient health care needs of adolescents and young adults (AYAs) who undergo cancer treatment. Understanding their age-related needs helps providers offer appropriate support when support is vital: as they accept diagnosis and undergo treatment. Methods: A mixed methods design was used to obtain quantitative and qualitative data on the overall needs of AYA cancer patients. Participants, aged 16-29, who enrolled early in their cancer treatment, completed the Stanford Adolescent and Young Adult Cancer (SAYAC) Program survey and a subsequent one-on-one semistructured interview. Results: The quantitative and qualitative data were analyzed separately. The data revealed that AYAs adjusted and adapted to their cancer diagnosis to meet their health care needs. Three themes emerged from the data: acquisition of knowledge and experience, participation in decision-making and self-management behaviors, and gaining perspectives on life inside and outside of the hospital. The quantitative data revealed that the participants agreed or strongly agreed on the importance of being involved in the decision-making process, incorporating hopes and dreams into their treatment, and feeling supported by their family. Conclusion: Understanding the needs of AYAs who undergo cancer treatment is vital to their overall well-being. Using different data collection methods, including interviews, can clarify AYA needs and lead to improved individualized care.

Purpose: There are few studies of adolescent and young adult (AYA) head and neck (H&N) cancer survivors treated with radiotherapy. A recall of AYA H&N survivors was performed and this article evaluates their cross-sectional patient-reported outcomes. Methods: AYA H&N cancer survivors who had received radiotherapy in British Columbia between 1970 and 2010 participated in this study. Participants completed the Psychosocial Screen for Cancer-Revised (PSSCAN-R), Research and Development (RAND)-36 health-related quality of life, and the Vanderbilt Head and Neck Symptom Survey, version 2.0 (VHNSS 2.0), to evaluate late effects from treatment. Results: There were 36 participants in the study. Severe symptoms (greater than or equal to 4/10) were reported on the VHNSS 2.0 by 51% of participants for xerostomia, 35% for dysphagia, and 37% for dental/mucosal sensitivity. On the PSSCAN-R, 35% had moderate/high anxiety scores and 48% had moderate/high depression scores. The mean RAND-36 participant scores were as follows: physical functioning, 86.1; physical role functioning, 71.4; emotional role functioning, 75.1; energy/fatigue, 56.6; emotional well-being, 74.6; social functioning, 76.3; bodily pain, 71.7; and general health, 65.6. Conclusions: AYA survivors in our study reported significant late effects from H&N radiotherapy and high depression and anxiety scores, but generally high health-related quality of life. Prospective evaluation of psychosocial needs and H&N-related complications is warranted in this subgroup at high risk of late effects from treatment.

Adolescent and young adult (AYA) patients with cancer have few opportunities to interact with peers in their lives. To meet peers safely during the coronavirus disease 2019 (COVID-19) pandemic, a hospital-based online patients support program called Online AYA Hiroba was launched for AYA patients with cancer and held regularly by the National Cancer Center Hospital in Japan. This retrospective study suggested the degree of satisfaction with this program and issues about facilitating the sessions that are unique to the online environment. Our findings potentially contribute to the establishment of a hospital-based online patients support program for AYA patients with cancer at other hospitals.

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Methods: We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Results: Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusions: Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.

Introduction: Among adolescents and young adults, cannabis use is prevalent. Prior studies characterizing withdrawal effects in this age range have primarily included treatment seeking or comorbid psychiatric samples; these studies have identified several affected domains, especially sleep, mood, and anxiety. The present study compared a community (i.e., nontreatment seeking) sample of cannabis-using and control participants on mood, anxiety, sleep, and withdrawal inventories during the course of a monitored 3-week cannabis abstinence period. Materials and Methods: Seventy-nine adolescent and young adult participants (cannabis-using group=37 and control group=42) were recruited from the community to undergo 3 weeks of confirmed abstinence (i.e., urine and sweat patch toxicology) and completion of Cannabis Withdrawal Symptom Criteria, State-Trait Anxiety Inventory, Beck's Depression Inventory, and Pittsburgh Sleep Quality Index across the study period. Repeated measures and cross-sectional regressions were used to examine main effects of group and interactions with time (where appropriate), while accounting for recent alcohol use and cotinine levels. Results: Cannabis-using participants reported higher mood ( p =0.006), overall withdrawal ( p =0.009), and sleep-related withdrawal ( p <0.001) symptoms across abstinence compared to controls. Overall withdrawal severity ( p =0.04) and sleep-related withdrawal symptoms ( p =0.02) demonstrated a quadratic trajectory across the monitored abstinence periods, with an increase from baseline and subsequent decreases in symptom severity. No differences of anxiety scores ( p =0.07) or trajectories ( p =0.18) were observed. By study completion, groups did not differ among sleep quality components (all p's >.05). Conclusions: These findings revealed that nontreatment-seeking cannabis-using adolescents and young adults reported heightened total withdrawal symptoms during a 3-week sustained abstinence period relative to controls. Cannabis-using participants demonstrated an increase in withdrawal symptom trajectory during the first week followed by decreased symptoms from weeks 2 to 3, which contrasts with prior linear decreases observed in cannabis-using adolescent and young adults. More mood symptoms were observed in the cannabis-using group even while excluding for comorbid psychopathologies-along with significantly more sleep problems during the abstinence period. Implications include the necessity to provide psychoeducation for recreational, nontreatment-seeking cannabis-using individuals about cannabis withdrawal, mood symptoms, and sleep quality difficulties when cannabis cessation is attempted, to improve likelihood of long-term sustained abstinence.

Adolescents and young adult (AYA) oncology care has evolved to address their unique supportive care needs, yet deficiencies remain. We planned a multiphase sequential mixed methods study beginning with focus groups (FGs) with AYAs receiving care at the Princess Margaret Cancer Centre, to improve supportive care delivery. Herewith, we report on the preliminary findings from first phase of project and outline future expected goals. Our findings suggest four major themes identified from FG discussion with AYAs: (1) having peer-driven support, (2) incorporating hybrid approach to information delivery, (3) integrating general practitioners in AYAs care, and (4) providing AYAs-specific supportive care programs.

Background: Computer-based cognitive rehabilitation programs may help adolescent and young adult (AYA) patients with cancer-related cognitive impairment. This pilot study investigated the feasibility of cognitive rehabilitation as a preventive intervention for AYA patients receiving chemotherapy. Explorative objectives included the correlation of cognitive performance with serum brain-derived neurotrophic factor (BDNF). Methods: This pilot prospective study included English-speaking patients 12-25 years of age with a fist diagnosis of cancer requiring chemotherapy. Participants enrolled in the intervention arm participated in a computer-based neurocognitive training program for 20-30 minutes daily for 16 weeks. Outcome measures, including engagement with and completion of computerized neurocognitive testing and serum BDNF levels, were obtained within the first month following diagnosis, ∼16 and 24 weeks from enrollment. Results: Fourteen of 18 eligible patients provided consent, with 7 patients assigned to each the intervention arm and nonintervention arm. Seventy-one percent of the patients in the intervention arm completed at least 80% of the required activities. Compared to baseline, patients in the nonintervention arm demonstrated higher prevalence of impairment in four of the six cognitive domains (processing speed, visual attention, attention/working memory, and executive function) at the end of the study period. There was a nonstatistically significant reduction of serum BDNF levels over time, which was observed in both intervention and nonintervention arms. Conclusion: This pilot study provides some evidence that it is feasible for AYAs with new cancer diagnoses to receive standardized cognitive rehabilitation. Patients receiving cognitive activities experienced less impairment in numerous cognitive domains.

Purpose: The purpose of the study was to create in Italian a transition protocol survey to monitor the readiness of childhood, adolescent, and young adult (CAYA) cancer survivors who are undergoing transition from pediatric to adult health care. A protocol could support clinical practice through the proposal of individualized transition care pathways for CAYA survivors and inform future scientific studies that focus on barriers to successful transition. Methods: Three international questionnaires that investigate the biopsychosocial issues and needs of survivors were subjected to the Forward and Backward Translation process. Following this, CAYA survivors were recruited from September 2019 to August 2020 in the pediatric oncology centers of the Interregional Pediatric Oncology Network of Piedmont and the Aosta in Italy to participate in cognitive interviews as part of the validation and cultural adaptation process of the questionnaires, which will form the transition protocol survey. Results: Revisions and cognitive interviews with 40 CAYA survivors identified any inadequate expressions and resolved any concepts of misunderstanding or cultural unsuitability for the Italian translation. Overall, they found the scales to be easily understandable, and an Italian version of the scales was produced to create the final transition protocol survey. Conclusion: The transition protocol survey might be used as a valid tool to highlight critical issues to support sustainable transition processes between Italian oncology centers. The protocol can be implemented into clinical practice thus offering CAYA the possibility of resolving some needs, receiving personalized support, and surveillance before the transition.

Introduction: Children, adolescents, and young adults (AYAs) with cancer are a special population who are subjected to a number of unique challenges, stressors, and barriers to high-quality psychological care. In a recent systematic review of measurement properties, we found that 5 of 18 identified patient-reported outcome measures (PROMs) had sufficient psychometric properties to justify their use. A next step is to analyze the reliability of these scale scores in a reliability-generalization meta-analysis. Methods: We conducted a systematic review of three databases for all studies reporting reliability data for previously identified PROMs. Included studies were further required to include patients with cancer, or survivors of cancer, ages 2-39. We next synthesized alpha and test-retest coefficients using best statistical practices, according to prespecified subgroups, where possible. We considered a threshold of 0.7 to represent sufficient evidence of reliability. Results: Seventy-one studies were included. Overall, reliability coefficients for scale and subscale scores exceeded 0.7. Subgroup analyses were limited by incomplete reporting and a lack of sufficient studies for each subgroup; however, where conducted, these subgroup analyses showed significant differences in the reliability of self-reports versus proxy reports and original versus adapted versions of PROMs. Discussion: We recommend better reporting of reliability data in future studies of children and AYAs with cancer. We discourage relying on historical reliability data in different samples and the reporting of only ranges of reliability coefficients for subscales. Our study suggests that significant differences in the reliability of PROMs may be associated with the PROM respondent and the version of the PROM, thus highlighting the need for further investigation.

Background: The Princess Margaret Cancer Centre (PM) established the adolescent and young adult (AYA) oncology program in 2014 to address the unique needs of AYA by delivering targeted, evidence-based care through a multidisciplinary team. Methods: We performed a retrospective analysis of patients who underwent a consultation with the PM AYA program from 2014 to 2020. The association between the health domain concerns reported and age at consultation, cancer diagnoses, and time since diagnosis was analyzed using chi-square test of independence in SPSS. Results: In our cohort of 1128 AYA, the median age at assessment was 28.2 years. The most common diagnoses were lymphoma ( n  = 251, 22.2%), leukemia ( n  = 207, 18.4%), and breast cancer ( n  = 162, 14.4%). The most common concerns reported were related to fertility ( n  = 882, 78.2%) and work/school ( n  = 472, 41.8%). Fertility concerns were most common in 25-34 age group (443/540, 82.0%) and work-/school-related concerns were highest in 18-24 age group (191/355, 53.8%). Diagnoses significantly affect majority of concerns reported. Fertility concerns were most common in AYA consulted near diagnosis, while body image-, exercise-, and diet-related concerns were more frequently reported, while on active treatments. Conclusions: Supporting fertility concerns remains the cornerstone of any successful AYA program. Work-/school-related concerns deserve more elucidation and attention. We identified important patterns in the health-related concerns of AYA, especially as they relate to age, diagnoses, and time since diagnosis. This insight will guide us for improving patient-centered care delivery to AYA.

Few studies have explored interventions to improve adolescent and young adult (AYA) cancer care delivery. While many AYAs receive cancer care at NCI Community Oncology Research Program (NCORP) sites, few enroll on clinical trials. Barriers and facilitators to pediatric oncologist activation of and enrollment on an AYA cross-network National Clinical Trials Network (NCTN) supportive care trial were assessed using a survey that was administered to 162 stakeholders representing all 47 children's oncology group (COG) institutions affiliated to an NCORP. Fifty-eight stakeholders participated representing 62% of all sites surveyed. Approximately half of participants (45%) were unaware of the trial. Seven sites had the study open and one enrolled a patient. Reasons for not opening and enrolling on the trial included limited research staff and resources, low anticipated accrual, and lower prioritization of the trial. Enrollment facilitators included having a local "AYA champion," improving communication between pediatric and medical oncology, and having site education on available AYA trials. Interventions focused on increasing site and provider awareness of AYA trials and decreasing local barriers to AYA enrollment are needed.

Purpose: There is lack of consensus on management of adolescent and young adult (AYA) Hodgkin lymphoma with respect to chemotherapy approach (adult or pediatric). Hence we sought to evaluate the efficacy and safety of Adriamycin, Bleomycin, Vinblastine and Dacarbazine (ABVD) chemotherapy in AYA Hodgkin lymphoma. Patients and Methods: It is a retrospective, observational, single-center study. From January 2013 to December 2016, all consecutive patients with AYA (15-25 years, all stages) were analyzed. The primary endpoint of the study was event-free survival (EFS). Secondary endpoints were complete response rates (CR) and overall survival (OS). Results: A total of 220 patients (70% men) with median age 20 years were evaluated. A significant proportion of patients had adverse features such as stage III/IV disease (63%), bulky disease (63%), extranodal involvement (37%), and marrow involvement (22%). After two cycles and end of therapy, 77% patients achieved complete response. Primary progressive disease was seen in 6% patients. With a median follow-up of 2.6 years, 19 (8.6%) patients relapsed, 1 patient developed second malignancy, and 6 patients died. Three-year EFS and OS were 81.3% and 97%, respectively. Bleomycin-induced lung injury was seen in 16% patients. On multivariate analysis stage at presentation, bone marrow involvement, partial response at interim positron emission tomography and International prognosis score (IPS) >3 were predictors of poor EFS. Conclusion: ABVD is an effective and safe regimen in AYA Hodgkin lymphoma. Advanced disease with high IPS (>3) score needs an early escalation approach to escBEACOPP regimen.

The extent of Advance Care Planning (ACP) among Adolescent and Young Adult (AYA) cancer patients is not well characterized. This retrospective case note audit scrutinized the records of all AYA patients (aged 16-25 years) known to a regional specialist center in the United Kingdom, and who died between 2013 and 2019, for evidence of ACP. Eighty-four patients were included. ACP was identified for 67% of patients. Sixty-four percent expressed a preferred place of death; actual place of death reflected this in 65% of cases. Creation of a bespoke document may help to standardize ACP and improve end-of-life care.

In this population-based evaluation of adolescents and young adults (AYA) acute lymphoblastic leukemia (ALL), we describe patterns of care (POC) and outcomes regarding hematopoietic cell transplantation (HCT) in first complete remission (CR1). Data were abstracted from the 2013 United States Surveillance, Epidemiology, and End Results POC study; newly diagnosed AYA ALL were included. Multivariable logistic regression evaluated associations with HCT in CR1; Cox proportional hazards regression evaluated survival associations. Of 399 AYAs with ALL included, 102 (28.5%) underwent HCT in CR1. High-risk cytogenetics (odds ratio [OR] = 4.86, 95% confidence interval [CI] = 3.02-7.83) and hyper-cyclophosphamide, vincristine, adriamycin, and dexamethasone (CVAD) induction (OR = 1.84, 95% CI = 1.07-3.16) were associated with HCT in CR1. Two-year cumulative incidence of relapse, relapse-free survival (RFS), and overall survival (OS) of the entire cohort were 28.3% (95% CI = 23.4-33.4), 69.3% (95% CI = 63.6-74.3%), and 84.1% (95% CI = 79.7-87.5), respectively. Two-year RFS was significantly higher in patients receiving CR1 HCT relative to chemotherapy (83.6%, 95% CI = 72.6-90.5% vs. 64.3%, 95% CI = 57.5-70.3), but no difference was seen in 2-year OS (88.9%, 95% CI = 80.8-93.7 vs. 82.5%, 95% CI = 77.2-86.7). Treatment at a nonteaching hospital was independently associated with inferior OS (hazard ratio = 2.15, 95% CI = 1.23-3.76). Although the ALL landscape is changing, these data provide a snapshot of the use and outcomes of HCT for AYA ALL across the United States.

Background: Timeliness is one of the fundamental yet understudied quality metrics of cancer care. Little is known about cancer treatment delay among adolescent and young adult (AYA) cancer patients. This study assessed cancer treatment delay, with a specific focus on facility transfer and diagnosis/treatment interval. Methods: Based on MultiCare Health System's (MHS's) institutional cancer registry data of AYA patients diagnosed during 2006-2015, this study analyzed patient demographics, insurance, clinical characteristics, and time of diagnosis and treatment initiation. Chi-squared tests, cumulative hazard estimates, and Cox proportional regression were used for univariable analysis. Multivariate regression models were used to test the association between care transfer and days of interval or prolonged delay, controlling for baseline parameters. Results: Of 840 analytic AYA cases identified, 457 (54.5%) were both diagnosed and treated within MHS. A total of 45.5% were either diagnosed or treated elsewhere. Mean and median intervals for treatment initiation were 27.03 (95% CI = 21.94-33.14) and 8.00 days (95% CI = 5.00-11.00), respectively, with significant differences between patients with and without facility transfer. Transfer was significantly correlated with longer length of diagnosis-to-treatment interval. Treatment delay, ≥1 week, was associated with transfer, female sex, older age, no surgery involvement, and more treatment modalities. Treatment delay, ≥4 weeks, was associated with transfer, female sex, no insurance, and no surgery involvement. Conclusion: In a community care setting, the diagnosis-to-treatment interval is significantly longer for transferred AYA cancer patients than for patients without a transfer. Future studies are warranted to explore the prognostic implications and the reasons for delays within specific cancer types.

Background: Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population., Objective: We aimed to prospectively describe the content and trajectory of benefit- and burden-finding among AYAs to develop potential targets for future intervention., Patients and Methods: One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-to-burden by patient and by time point., Setting/subjects: Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3) completed 44 interviews with >100 hours of transcript-data., Results: Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose., Conclusions: AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes.

Purpose: Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treatment care using focus groups and a willingness to pay (WTP) survey. WTP, a measure of value, indicates the dollar amount individuals are willing to pay to use a service., Methods: Participants were recruited through the Utah Cancer Registry. N = 28 survivors diagnosed with cancer at ages 15-39 and currently aged ≥18 participated in focus groups, and N = 4 in phone interviews (participation rate = 50%). All participants responded to a demographic survey and WTP questions based on one-time and monthly payments for annual visits. Focus group participants responded to an open-ended question on the value of follow-up care. Interval regressions identified factors associated with WTP. Qualitative analysis summarized themes for the open-ended question., Results: Focus group participants reported valuing follow-up care as it brings peace of mind and helps them manage their health. Yet, 38% reported not having a cancer-related visit in the previous year. Only 27% and 43% of survivors agreed to pay any one-time and monthly payments, respectively. The monthly payment mean WTP was $41 (95% confidence interval [CI]: 31-84), equating to $494 annually, which is greater than the mean WTP for one-time payment ($362, 95% CI: 293-432, p < 0.001), suggesting that survivors may prefer monthly payments. Several factors, including being female and in better health, predicted higher WTP., Conclusion: Many AYA cancer survivors report not visiting their doctors annually for post-treatment care despite verbally valuing care. Models that demonstrate high quality and distribute costs over time should be evaluated to encourage survivors to receive recommended care.