Quality of End-of-Life Care for Adolescent and Young Adult Patients with Cancer and Depression and Grief in Bereaved Families: A Secondary Analysis.

A New Journal to Improve Care for Adolescent and Young Adult Oncology Patients and Survivors.

Introduction: The prognosis of adolescent and young adult (AYA) patients with colorectal cancer (CRC) is still unclear. The aim of this study was to investigate the clinical features and prognosis in AYA patients compared with middle- aged patients.Methods: Participants were identified from a clinical database of the multicenter cohort in Japan. The AYA group was defined as those <40 years of age, whereas the middle-aged group was defined in 10-year ranges around the median age of all patients. The primary outcome was the overall survival (OS), and the secondary outcome was the recurrence-free survival (RFS).Results: A total of 502 patients were enrolled as the AYA group, and 7222 patients between 65 and 74 years of age were identified as the middle-aged group. The OS of colon cancer in stages II and III was significantly better in the AYA group (p = 0.033, 0.006, respectively) than in the middle-aged groups. There were no significant differences in the OS of rectal cancer in stages II and III between the two groups.Conclusion: The prognosis of AYA patients with CRC was the same or better than that in middle-aged patients.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs' psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT. This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants. Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs' psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences. SGOT is an impactful OHC used to meet AYAs' social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.

218 Background: Given the occurrence of cancer during a complex developmental time, adolescent and young adult (AYA) patients have unique psychosocial needs, necessitating supportive care guidelines including National Comprehensive Cancer Network (NCCN) AYA guidelines. We sought to assess compliance with NCCN AYA guidelines and compare to oncology provider identified AYA care needs. Methods: Retrospective chart review was performed on AYA patients (15-39 years) with sarcoma seen at least once in 2019 at the University of Wisconsin (UW), identifying documentation of discussions deemed critical per NCCN AYA guidelines. As per ASCO’s Quality Oncology Practice Initiative certification, we considered a threshold of 75% or higher to be compliant. Compliance was compared with an electronic survey of UW oncology providers regarding AYA patient needs, with items determined to have adequate resources if noted sufficient by &gt;75% of providers. Results: We identified 43 AYA patients with sarcoma. As seen in table, &lt;75% of patients had documentation regarding contraception, fertility, finances, genetics, social work referral and clinical trials indicating non-compliance. Surveys, completed by 38 oncology providers, showed significant discordance between provider’s perception of adequate access to resources and compliance on chart review. Conclusions: Disparities between oncology provider assessment of AYA care needs and lack of documentation of critical components of AYA patient care demonstrates the need for novel tools to evaluate AYA care needs beyond provider assessments. Care needs identified in our study will serve as the basis of an ongoing quality improvement project to better support AYA patients at UW. [Table: see text]

Myelodysplastic Syndromes in Adolescent Young Adults: One Institution's Experience.

Effects of Post-Transplant Cyclophosphamide on Outcomes of Allogeneic Stem Cell Transplant Are Different between Older and Younger Adult Patients: A Single Institutional Experience

63 Background: Adolescent and young adults (AYA) diagnosed with cancer have distinct physical, developmental and psychosocial needs that are often unmet during oncology treatment. Such needs are further intensified for AYA patients with an advanced cancer diagnosis. Palliative Care (PC), specialized care for patients and families with serious illness, can address these needs throughout the disease trajectory including symptom management, supportive communication, and advance care planning. The incorporation of PC remains suboptimal despite evidence that palliative services can improve quality of life. In an effort to identify strategies to advance access to PC for the AYA population at our institution, the referral pattern to PC was studied. Methods: A retrospective chart review was performed to identify referral patterns to PC in the AYA population (ages 18-39) from July 2017 through June 2019 at a National Cancer Institute designated comprehensive cancer center. Descriptive statistics were utilized to summarize referral patterns and trends. Results: In the past 2 years, 1,894 AYA patients established oncology care at our institution. The most common AYA cancer diagnoses included hematologic 20.8% (n=944), thyroid 10.8% (n=490), brain 9.9% (n=451) and breast 9.1% (n=414). There were 311 (16%) referrals placed to PC, mostly in the inpatient setting (81.4%). Less than half (43%) of the inpatient referrals had a post-discharge follow-up appointment in the PC clinic. Multiple disease-specific service lines were represented including leukemia (40%), colorectal (14.5%), sarcoma (9%) and breast (9%). Quarterly volumetric trends remained static over the 2 years (average number of referrals: 54/quarter). The average age at cancer diagnosis in the AYA population was 30 years and 32.7 years (range 19-39) at time of PC referral. This was consistent with the average length of time from initial diagnosis to PC referral of 2.8 years. Conclusions: Comprehensive oncology care in the AYA population should include PC. Yet, involvement of PC in the AYA population during oncologic treatment was limited. Future research will investigate optimal models of integrative PC to address the unique needs of AYA cancer.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack research investigating age-appropriate programs targeting AYAs' psychosocial needs that are delivered virtually and extend beyond the hospital setting. Streetlight is a palliative care program designed for chronically ill AYAs that offers the Streetlight Gaming League (SGL), an online health community (OHC) combining peer-based support, online gaming, and community events. We evaluated the usefulness, acceptability, and potential effectiveness of SGL through an assessment of chronically ill AYAs' lived experiences. We used a qualitative evaluation approach grounded in hermeneutic phenomenology. Questionnaires and interviews were conducted with 9 chronically ill AYAs to elicit in-depth accounts of their lived experiences of using SGL. Descriptive statistical analysis was performed on questionnaire data. Phenomenological data analysis, informed by hermeneutic analysis, was used to analyze interviews. AYAs reported positive experiences with SGL and valued the ability to engage in various content while having few participation expectations. They also described psychosocial benefits, including reprieve from illness, sense of community, and solidarity through mutual understandings and shared experiences. Findings highlight the usefulness and acceptability of a virtual palliative psychosocial care program for chronically ill AYAs. Findings also suggest the effectiveness of SGL and support using an OHC to meet the psychosocial needs of AYAs. This study can guide future programming and implementation of online palliative psychosocial care programs in other hospital settings, resulting in similar beneficial and meaningful experiences.

Risk-Adjusted Therapies Yield Equivalent Outcomes for Adolescents and Young Adults (AYAs) Treated for Newly Diagnosed T-Cell Acute Lymphoblastic Leukemia (T-ALL) on Children's Oncology Group (COG) Studies AALL0434 and AALL1231

Hematopoietic Stem Cell Transplantation for Acute Lymphoblastic Leukemia: Why Do Adolescents and Young Adults Outcomes Differ from Those of Children? a Study on Behalf of the Francophone Society of Stem Cell Transplantation and Cellular Therapy (SFGM-TC)

Analysis of Outcomes In Adolescents and Young Adults (AYA) with Chronic Myeloid Leukemia (CML) Treated with Upfront Tyrosine Kinase Inhibitors (TKI)

Given the occurrence of cancer during a complex developmental time, adolescent and young adult (AYA) patients have unique psychosocial needs that necessitate supportive care, which is optimally provided using National Comprehensive Cancer Network (NCCN) AYA guidelines. We sought to explore compliance with NCCN AYA guidelines and compare with oncology providers' perceptions of AYA care needs. Retrospective chart reviews of AYA patients (15-39 years at time of cancer diagnosis) with sarcoma seen at least once in 2019 at the University of Wisconsin identified documentation of discussions deemed critical per NCCN AYA guidelines. As per the ASCO Quality Oncology Practice Initiative certification, we considered a threshold of these factors being discussed 75% of the time or higher to be compliant. Compliance was compared with an electronic survey of University of Wisconsin oncology providers regarding AYA patient needs, with items determined to have adequate resources if noted sufficient by at least 75% of providers. We identified 43 AYA patients with sarcoma. Less than 75% of patients had documentation of discussion of contraception, sexual health, fertility, finances, genetics, social work referral, and clinical trials indicating noncompliance with NCCN guidelines. Surveys, completed by 38 oncology providers, showed significant discordance between providers' perceptions of AYAs' access to resources and providers' documented discussions of supportive care resources. Disparities between oncology provider assessment of AYA care needs and documentation of critical components of AYA patient care demonstrate the need for novel tools to evaluate AYA care needs beyond provider assessments.

Approaches to Increasing Clinical Trial Access and Enrollment for Adolescents and Young Adults with Cancer.

e23083 Background: Breast cancer is the most common cancer among adolescent and young adult (AYA) women in the US, accounting for 15% of all invasive cancers. AYA women are more likely to be diagnosed with de novo metastatic breast cancer (MBC); they also have unique cancer care needs. The characteristics of inpatient hospitalizations and outcomes in this population have not been investigated. Methods: Using the Agency for Healthcare Research and Quality (AHRQ) sponsored Healthcare Cost and Utilization Project – National Inpatient Sample (HCUP-NIS) database, we conducted a retrospective cohort analysis among female AYA MBC patients from 2016-2020. Descriptive analyses were used to compare sociodemographic and clinical characteristics between AYA and older patients. Multivariable logistic and linear regression analyses examined the association between age groups and inpatient mortality, length of stay (LOS), and hospital charges based on a 1:10 propensity score matched cohort (by race/ethnicity, hospital region, hospital location, income quartiles, insurance type, Charlson comorbidity index). Results: There were 73,873 female MBC patient hospitalizations within the 5-year period. Of these, 4,252 (5.8%) were AYA (15-39 years). The mean age was 34.6 years in the AYA group and 64.3 years in the older group. AYA patients were more likely to be Black (26.5% vs 18.1%; p &lt; 0.001) or Hispanic (16% vs 9%; p &lt; 0.001), obese (57.3% vs 48.3%; p &lt; 0.001), and have private insurance (46.2% vs 30.1%, p &lt; 0.001) or Medicaid (37.4% vs 13.3%, p &lt; 0.001). Compared to AYA patients, older patients had a higher likelihood of being discharged to a short term/skilled nursing facility or with home health. AYA patients were less likely to have heart failure, chronic kidney disease or liver disease than older patients. Furthermore, AYA patients had lower odds of inpatient mortality (AOR: 0.83; 95% CI 0.73–0.94), shorter hospital stays (AOR: 0.88; 95% CI: 0.82–0.95) but more ICU admissions (AOR: 1.57; 95% CI 1.10–2.24) and higher total hospital charges (b: $4,431; 95% CI $1,384–$7477) relative to older patients. Conclusions: Our findings highlight distinct characteristics and hospital associated outcomes, emphasizing the need for tailored healthcare strategies to address the unique challenges faced by AYA MBC patients. Further research is needed to identify the factors driving these disparities and optimize care for this vulnerable population. Characteristics and outcomes of female AYA metastatic breast cancer patients. AYA patients Older patients p value Weighted % Obese 57.3 48.3 &lt;0.001 Transfer to facility 8.2 20.7 &lt;0.001 Discharged with home health 20.4 26.7 &lt;0.001 Chemotherapy 1.5 0.6 &lt;0.001 Radiation 0.4 0.2 0.045 AOR (95% CI) Inpatient mortality 0.83 (0.73–0.94) Ref 0.004 Length of stay &gt;5 days 0.88 (0.82–0.95) Ref 0.001 ICU admissions 1.57 (1.10–2.24) Ref 0.012 β (95% CI) Total hospital charges 4431 (1384–7477) Ref 0.004

Chronic Myeloid Leukemia in Adolescents and Young Adults: A SEER-Based Analysis of Characteristics and Survival Outcomes of 1565 Patients