Collaboration and Networking.

Adolescents and young adults (AYAs) with cancer represent a unique group with unmet needs. Metrics and quality indicators are important for evaluating AYA cancer care. The purpose of this study is to describe the quality indicators in a Canadian context that are used for AYA (15-39 years of age) cancer care and control. The Arksey and O'Malley methodological framework was applied to undertake a scoping review of the peer-reviewed and gray literature for indicators related to AYA cancer care and control. OVID Medline was searched from January 1995 until April 2018 for English language articles. Inquiries were made to AYA cancer organizations and a Google search conducted to identify unpublished material. Articles were included if they incorporated AYAs and contained cancer care indicators. Data were summarized at the article and indicator level. A total of 610 abstracts were reviewed. Eighty-nine full-text articles and reports were assessed for eligibility, with 19 included in analyses which identified 146 indicators or indicator concepts. Most of the indicators were specific to the AYA age group (65.8%) and dealt with the active care theme (57.5%), almost half focusing on guideline adherence and treatment (26.4%) and multidisciplinary/specialized care (20.7%). Notable deficits in indicators were in fertility, psychosocial care, and prevention. Important progress has been made internationally and within Canada on developing indicators for AYA cancer care and control. However, there is a lack of well-defined AYA-specific cancer care indicators developed through a consensus process.

105 Background: Adolescents and Young Adults (AYAs), aged 15-39, experience unique challenges in cancer care. Frequent health insurance gaps for this population due to age, employment, and living changes hinder effective care and outcome assessments. Uninsured AYAs have lower survival rates, and insurance disparities are notable among Black, Hispanic, and rural patients; however, patterns of enrollment among AYAs have not been well described. Our study examined these patterns using insurance claims data to better inform AYA cancer care and outcomes. Methods: We conducted a retrospective cohort study with the Cancer Information and Population Health Resource (CIPHR), a linkage of cancer registry data and private and public payer data in North Carolina, including Medicaid and over 70% of the private insurance market. We included patients aged 15-39 diagnosed with common AYA cancers (leukemia, lymphoma, breast cancer, melanoma, sarcoma, germ cell tumors) from 2003-2019, linked to claims from 2003-2020. We analyzed insurance coverage patterns, comparing continuous enrollment 1) from two months pre-diagnosis to 12 months post-diagnosis and 2) from the month of diagnosis through 12 months. We compared demographics, clinical characteristics, and insurance types across scenarios. Results: The full cancer registry cohort included 21,060 AYAs; 11,024 (52.3%) had no link to Medicaid or private insurance in the year of cancer diagnosis. Continuous enrollment was 4,707 (22.4%) from two months prior through 12 months after, increasing to 5,912 (28.1%) for month of diagnosis through 12 months, particularly among Medicaid beneficiaries (from 10.8% to 15.6% of total cohort). Less restrictive criteria increased representation among Black (from 29.1% to 38.5%) and rural patients (from 25.2% to 33.1%) and those with leukemia (25.2% to 33.8%) and lymphoma (24.0% to 31.0%). Conclusions: AYAs face substantial hurdles with discontinuous insurance coverage around their cancer diagnosis. Claims-based research can characterize cancer care delivery, and use of less restrictive eligibility criteria expands the generalizability of findings to a more diverse cohort of AYAs. Increasing health insurance coverage over time may be due to the Affordable Care Act. Medicaid expansion within our state is likely to further improve access for AYAs. Continued efforts are essential to help AYAs with cancer secure necessary insurance coverage. Characteristics of AYAs by insurance enrollment criteria. Registry Cohort (n = 21,060) Continuous Enrollment –2 mos to 12 mos (n= 4,707) Continuous Enrollment 0 to 12 mos (n = 5,912) Cancer Type Breast 5817 1345 (23.1%) 1754 (30.2%) Sarcoma 1833 429 (23.4%) 532 (29.0%) Lymphoma 4436 1064 (24.0%) 1374 (31.0%) Leukemia 2393 604 (25.2%) 809 (33.8%) Race/Ethnicity Black 3951 1150 (29.1%) 1521 (38.5%) White 14620 3153 (21.6%) 3886 (26.6%) Hispanic 1296 164 (12.7%) 210 (16.2%) Location Urban 16277 Rural 4728 1190 (25.2%) 1565 (33.1%)

ObjectiveTo determine the spectrum of cancers in adolescents and young adults (AYAs) living with and without HIV in South Africa.DesignCross-sectional study with cancer records provided by the National Cancer Registry...

371 Background: Identity development is the process that informs how an individual views oneself and develops a sense of self. A cancer diagnosis during adolescence and young adulthood (AYA; ages 15-39) disrupts AYAs’ identity development and creates identity distress. Identity development is a key developmental task during AYA. It is a recognized psychosocial concern and need for diagnosed AYAs but remains an understudied psychosocial need in AYA oncology care. Identity development can be promoted (or inhibited) in AYAs’ social interactions. AYAs’ communication with parents (often their primary source of support) may function adaptively or maladaptively for AYAs’ identity development. A communication skills intervention for diagnosed AYAs and parents could address communication strategies that promote AYAs’ healthy identity development while buffering identity distress. To capture knowledge that will contribute to a communication skill intervention, this study aimed to identify parent – AYA communication that promotes or inhibits identity formation. Methods: We recruited 14 AYAs to participate in audio-recorded, semi-structured, in-depth interviews. Eligibility criteria for AYAs included: 1) must be diagnosed with any type of cancer during adolescence (aged 15-18) or emerging adulthood (aged 19-29) and 2) be in active treatment or up to 32 months since the end of treatment. Interviews were thematically analyzed using constant comparative method. Results: AYAs’ age ranged from 19-29 ( M =24 years old), and their age of diagnosis ranged from 15-27 years ( M =21 years old). Diagnosed AYAs shared four types of identity disruptions that involved communication with their parents: independence, friendships, sexual orientation/behavior, and long-term goals. They also shared how parents’ communication either promoted identity development or contributed to identity distress. Results indicated that parents’ using parental psychological control in communication contributed to AYAs’ identity distress. AYAs shared parents prioritizing the AYA’s voice and engaging in emotionally supportive communication fostered their identity development. Conclusions: This study captures specific communication approaches and behaviors in parent-AYA communication and its promotion of AYAs’ identity development or contribution to identity distress. Findings demonstrate the importance of developing communication skills training and conversation tools to helps both AYAs and parents learn how to communicate to promote AYAs’ identity development and better overall psychological well-being.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

With prior reports indicating a lack of progress in survival improvement in older adolescents and young adults (AYAs) aged 15 to 39 years with cancer compared with both younger and older patients with cancer, the current analysis provides an update of survival trends of cancers among AYAs, children, and older adults. Data from the National Cancer Institute Surveillance, Epidemiology, and End Results database for 13 regions were used to ascertain survival trends of the 34 most frequent cancers diagnosed in AYAs compared with children and older adults. As of 2002 through 2006, the 5-year relative survival rate for all invasive cancers in AYAs was 82.5% (standard error, 0.2%). In AYAs, 14 cancers demonstrated evidence of a statistically significant improvement in their 5-year relative survival since 1992. Survival improved less in AYAs than in children for acute myeloid leukemia and medulloblastoma. Fourteen cancers had survival improvements that were found to be less in AYAs compared with older adults, including hepatic carcinoma, acute myeloid leukemia, high-grade astrocytoma, acute lymphocytic leukemia, pancreatic carcinoma, low-grade astrocytoma, gastric carcinoma, renal carcinoma, cancer of the oral cavity and pharynx, Hodgkin lymphoma, ovarian cancer, fibromatous sarcoma, other soft tissue sarcoma, and thyroid carcinoma. Improvements in the survival of several cancer types that occur frequently in AYAs are encouraging. However, survival does not appear to be improving to the same extent in AYAs as in children or older adults for several cancers. Further investment in exploring the distinct biology of tumors in this age group, and of their hosts, must be a priority in AYA oncology.

Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.

Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents

<div>Abstract<p><b>Background:</b> Existing comorbidity indices were not developed for adolescent and young adults (AYA) 15 to 39 years of age. The aim of this study was to assess impact of comorbidities on health care service needs and health status among AYA cancer survivors using the newly developed AYA HOPE comorbidity index in comparison with the existing indices.</p><p><b>Methods:</b> Data on comorbid conditions were obtained from medical records and service needs and health status were from a survey of AYA cancer survivors. Prevalence of comorbidities was based on the AYA HOPE index. Charlson and NCI indices were compared. Multivariable logistic regression was used.</p><p><b>Results:</b> Of the 485 patients, 14.6% had ≥2 comorbidities based on the AYA HOPE Index. Prevalence of mental illness and obesity/overweight, which were not included in existing indices, were 8.2% and 5.8%, respectively. Prevalence of cardiovascular, endocrine, gastrointestinal, and neurologic conditions were higher with the AYA HOPE Index than the other two indices. Forty percent of AYA patients reported service needs, particularly for mental health services (25.2%) and support groups (17.7%). Having ≥2 comorbidities on the AYA index was associated with higher mental health service needs [OR, 2.05; 95% confidence interval (CI), 1.10–3.82] adjusting for demographic and clinical factors. Comorbidities were associated with fair/poor self-reported health status.</p><p><b>Conclusion:</b> The AYA HOPE Index is a more comprehensive comorbidity index for AYA cancer patients than existing indices, and the number of comorbidities is associated with service needs and health status.</p><p><b>Impact:</b> The AYA HOPE index could identify patients' additional service needs early in therapy. <i>Cancer Epidemiol Biomarkers Prev; 24(12); 1844–9. ©2015 AACR</i>.</p></div>

Comprehensive genomic profiling (CGP) and specialized support for adolescent and young adult (AYA) cancer patients are crucial yet underexplored areas of healthcare in Japan. This study investigated awareness of CGP testing and support for AYA cancer patients among healthcare professionals in Osaka. An anonymous online survey was conducted from 31 January to 31 March 2024. The survey targeted all staff, including doctors, nurses, technicians, pharmacists and others, from eight Toyono Medical Area Cancer Medical Network Council hospitals. The survey included questions on basic demographics, awareness of CGP testing and support provided to patients with AYA cancer. Among the 720 respondents, 41.9% were aware of CGP testing, while 20.3% were unaware. Regarding AYA cancer, 60.7% were aware and 14.3% were unaware. Only 7.5% had frequent contact with AYA patients and 96.8% recognized the need for education and information. Awareness of CGP was greater among doctors (72.5%) than among other professionals (34.4%); similarly, AYA cancer awareness was higher among doctors (73.9%) than among other professionals (57.7%). CGP awareness among doctors varied by years of experience and institutional type, being highest in core and cooperative hospitals (80 and 78.6%, respectively) and among doctors with more than 21years of experience (90%). This study reveals significant gaps in CGP and AYA cancer awareness among healthcare professionals in Osaka, Japan, with doctors demonstrating higher awareness levels than other professionals. There is a pressing need for targeted educational programs to enhance the understanding and implementation of CGP and support AYA cancer patients.

PurposeThis study investigated the incidence and relative survival rates (RSRs) for cancers among adolescents and young adults (AYAs) aged 15–39 years between 1993 and 2016 in Korea.Materials and MethodsData from the Korea Central Cancer Registry were used to calculate percent distributions, age-specific incidence rates, age-standardized incidence rates (ASRs) per million, annual percent changes (APCs), average APCs, and RSRs for cancers diagnosed in AYAs.ResultsASR of all cancers among AYAs was 654.5 per million. The largest diagnosed group of cancers was carcinomas (almost 80%). Crude incidence increased with age, from 170.4 per million for those aged 15–19 years to 1,639.8 per million for those aged 35–39 years. ASR increased from 414.8 per million to 820.4 per million, with an APC of 9.0%. The incidence of thyroid carcinoma showed the most rapid increment (APC, 14.0%), followed by non-Hodgkin lymphoma (APC, 13.4%). The 5-year RSR among AYAs significantly improved from 62.1% to 90.8%. Survival improvement in AYAs was higher than that in children but lower than that in older adults (APC, 2.1% vs. 1.9% vs. 3.1%). The most marked survival improvement was found for leukemia and lymphoma. Astrocytoma, rhabdomyosarcoma, and carcinoma of the trachea, bronchus, and lung had a 5-year RSR of < 50%.ConclusionThere was an improvement in cancer survivals in AYAs, comparable to that achieved in children. However, survivals in several cancer types do not appear to be improving. Further research focusing on the epidemiology and therapeutic strategies for cancers in AYAs is needed.

149 Background: Adolescent and young adults (AYA) aged 15-39 years with cancer represent a patient population with very unique needs extending into the psychosocial realm. Consequently AYA participation on cancer clinical trials has been dismally low in recent decades, particularly on early phase trials with investigational agents. In an effort to better understand AYAs with advanced cancer, we analyzed their characteristics and participation on phase I clinical trials. Methods: We queried a department database to identify 1489 consecutive pts treated on phase I trials bw Dec 2004-July 2013 and then divided into 2 age-based groups (AYA 15-39y, mid age 40-64y) for analysis of their baseline characteristics, participation, time to treatment failure (TTF), and imaging response. We then calculated the odds ratios of achieving a favorable clinical benefit (defined as a RECIST response of prolonged SD≥6m+PR+CR) for AYAs vs mid-age pts. Results: AYAs represented 15% (n = 220) of participants treated on phase I trials while 67% (n = 991) were middle age. Most AYAs were women (63% female, 33% male) w median age being 32.6 years and a median of 3 prior therapies. AYAs most commonly had GYN (n = 41, 19%), sarcoma (n = 39, 18%), GI (n = 35, 16%), thoracic/head/neck (n = 31, 14%), melanoma (n = 27, 12%), and breast (n = 20, 9%) cancers. AYA had a comparable median TTF of 3.3m to mid age pts (3.5m). Overall, 369 (37%) mid age and 96 (44%) AYAs received a non-FDA approved agent. Imaging responses among AYAs showed 93 (42%) SD including 42 (19%) prolonged SD (median duration 9.7m), 34 (15%) PR (median duration 9.5m), and 2 AYAs with a CR lasting 36.2m and 50.1m. Conclusions: AYA patients represented just 15% of phase I clinical trials participants; none of these trials measured patient reported outcomes or quality of life indices, highlighting an urgent need for comprehensive supportive care integration into AYA care to tend to the unique psychosocial, economic, and family needs of this population to ultimately identify and overcome barriers to clinical trial participation.

Barriers to Transition from Pediatric to Adult Care in Adolescents and Young Adults with Sickle Cell Disease: A Mixed-Method Study on the Impact of Systems of Inequity

e13512 Background: While there has been ongoing work to define the role of primary care providers (PCPs) in adolescent and young adult (AYA) survivorship models, little has been done to understand the role of PCPs earlier in the care continuum. As PCP-shared models of care have been theorized to help address morbidity related to the physical and psychosocial effects of cancer and its treatment, there is a need to better understand the impact of PCPs on AYAs. Given this, we sought to study the influence of PCPs in the care of AYAs with cancer, comparing care receipt and satisfaction during treatment versus in survivorship. Methods: Electronic health record query identified adult AYA cancer patients 19-39 years with at least two visits at the University of Wisconsin from 3/30/2019-3/29/2020. Identified patients were sent an electronic survey to assess care team members and impact on care. Responses were categorized based on patient-reported presence of a PCP as part of their cancer care team. For the data analysis, all patients who did not self-identify as long-term survivors, defined as 5+ years since diagnosis, were defined as active patients. Given survey answers were not mandated for all questions, the denominator was unique for each question. Results: We found a minority of AYAs responding to our survey considered a PCP as part of their cancer care team (71/173, 41%). PCP presence led to improved satisfaction in all AYAs with addressing the impact of diagnosis/treatment on peer interactions and independence, with 67% (45/67) AYAs with a PCP very or some satisfied versus 55% (53/97) without a PCP. PCPs also decreased the likelihood that supportive care services weren’t received by patients due to a lack of knowledge of the services, seen in 64% (56/88) AYAs without a PCP versus 52% (32/62) with a PCP. As seen in table, there were several findings suggesting that PCP involvement in AYA care was more critical to active patients than long-term survivors, including supportive care service receipt and satisfaction with such services. Conclusions: Overall, we found PCP involvement on cancer care teams was important for AYAs defined as both active patients and long-term survivors. Despite this, less than half of all patients identified PCPs as part of their care team. Our data suggest PCP-shared models of cancer care may improve care utilization and satisfaction in AYAs and support efforts to incorporate PCPs as meaningful members of the care team throughout all phases of care. Survey responses based on PCP inclusion as cancer care team member and patient treatment status.[Table: see text]

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.