Adolescent Young Adult Cancer Survivors Research Articles

AYA-UNITE: Lessons Learned on Intervention Development Promoting Social and Physical Health of Adolescent/Young Adult Cancer Survivors.

Adolescent/young adult cancer survivors (AYACS) struggle with poor psychosocial health related to social disruptions due to cancer diagnosis, impacting long-term goal achievement and overall health. In particular, social health promotion is overlooked in AYACS' care. AYA-UNITE, a sociobehavioral exercise intervention pilot for AYACS 15-21 years of age at cancer diagnosis, was designed to foster AYACS' social and physical health. AYA-UNITE was a 12-week group-based virtual exercise program incorporating strength training and aerobic activity. In this brief report, we account AYA-UNITE's conceptual design, lessons learned through AYA-UNITE intervention development, and opportunities for improvement in implementing effective AYACS psychosocial interventions (NCT03778658).

Patterns of Independence in Adolescent/Young Adult (AYA) Survivors of Childhood Cancer Having Received Radiotherapy (RT)

AYA cancer survivors are at risk for missed care opportunities due to transitions of care and movement towards independence. This study was undertaken to evaluate steps towards independence of AYA survivors voluntarily using a free, Internet-based tool for creation of survivorship care plans (SCP). A free, publicly accessible tool, Smart-ALACC (Smart Adult Living after Childhood Cancer) was made available on Oncolink.org. Analysis of convenience sample frame was performed with IRB approval. From 12/2017-12/2022, 676 AYA survivors utilized the tool; 55% (372) identified as female. Most (75%, 506) were white, 7% (48) Black, 7% (46) Asian, 6% (42) Hispanic, 5% other/ mixed race. Median age was 20y (R <16 - 46y) and median age at diagnosis was 11 y (R <1y - 21). Most common diagnoses were leukemia (31%, 212), lymphoma (21%, 140), sarcoma (14%, 95), CNS (9%, 54), and neuroblastoma (5%, 37). 311 pts (46%) reported having had RT, most commonly brain (PB) (19%, 60), "mantle" (14%, 43), craniospinal (CSI) (12%, 36), total body irradiation (TBI) (11%, 34), and head/ neck (8%, 26). Most (92%, 619) denied recurrence /secondary malignancy. Users reported being students (64%, 434) or working (24% (163)) full-time (20%) or part-time (4%); 4% (25) were neither. Most reported living with parents (71%, 482), 14% (92) with a partner/ spouse, 7% (46) alone, and 4% (30) with a roommate. Most reported using parental insurance (54%, 368), while 24% (163) had their own private insurance, 7% (49) public, and 2% uninsured. Of 466 users 18+ (466), more were employed (34%, 155, p = 0.04), living separately from parents (40%, 168, p < 0.001), and had independent insurance (52%, 184, p = 0.03). Of users 23+ (244), 141 (57%) were being employed (p < 0.001), 83% (153) living separately from parents (p < 0.001), and 165 (67%) had independent insurance (p < 0.001). Among users age 23+, survivors who had received brain RT (CSI, brain, or TBI) were less likely to live separately parents or with a spouse/ partner (p < 0.001), but equally likely to be employed (Table 1). AYA survivors choosing to use a SCP tool have diagnoses reflective of diagnostic patterns in pediatric oncology; many have had RT expected to be associated with cognitive and developmental late effects. Despite this, trends towards employment and independence were evident in young adult population compared to adolescent; somewhat less so in survivors having had brain RT. These data suggest that AYA survivors display independence from parents and require population directed survivorship support; future efforts should aim to include a more diverse body of users.

Leveraging a community-academic partnership to evaluate the needs of Latinx AYA cancer survivors.

10060 Background: Adult survivors of childhood cancer have an increased risk of late death and treatment-related comorbidities, yet &lt; 20% of survivors receive guideline concordant risk-based care. Individual-level disadvantages and population-level measures of deprivation contribute to unequal health outcomes among survivors. We aimed to explore the experiences of adolescent/young adult (AYA) cancer survivors and their parents in a region in California with low socioeconomic status and high rates of non-English language preference. Methods: We formed a community-academic partnership with Jacob’s Heart, a nonprofit organization that provides material/psychosocial support to predominantly Hispanic/Latino (Latinx) families of children with cancer. Between Feb-July 2022, we conducted semi-structured interviews in-person or by video or phone with English- or Spanish-speaking AYA survivors of childhood cancer (age ≥15 years, ≥5 years post-diagnosis), parents, and Jacob’s Heart staff members, with assistance from certified medical interpreters. Data were analyzed qualitatively using reflexive thematic analysis based on grounded theory and the constant comparative method. Themes were refined through team discussions with our community partners. Results: We interviewed 12 AYAs (11 Latinx and bilingual), 11 parents (8 Latinx, 7 non-English preferred), and 7 organization staff (5 Latinx and bilingual). AYAs (5 female, 7 male) were median age (min-max) 20 (16-32) and 9 (5-19) years post-diagnosis; parents (9 female, 2 male) were median age 48 (40-60) and 14 (6-23) years post-child’s diagnosis. Cancer types were leukemia (6 AYAs, 9 parents), CNS tumors (1 AYA, 2 parents), other solid tumors (3 AYAs), lymphoma (2 AYAs). Key themes across interviews included gratitude and trust in the pediatric cancer care team and Jacob’s Heart staff, challenges obtaining healthcare outside of the pediatric cancer setting, lasting effects of cancer on the family (e.g., parental job loss, financial strain, impact on siblings, prolonged fear of recurrence in parents, unmet mental health needs in parents and AYAs), and communication barriers between Latinx families and clinicians (e.g., hesitancy to ask questions, overwhelmed by medical information) and between AYAs and parents (e.g., avoidance of talking about cancer history, cancer-related stigma, differing language preferences of AYAs and parents). Conclusions: Childhood cancer has long-lasting effects on families and those with fewer socioeconomic resources face additional burdens. Communication gaps experienced by Latinx families may be a target for intervention to improve AYA survivorship care. Future steps include sharing results with participants and partnering with the community to co-design interventions to facilitate triadic communication among Latinx AYAs, parents, and clinicians.

Abstract B042: Understanding unmet needs of adult survivors of childhood cancer in California’s Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment

Abstract Childhood cancer survivors are at elevated risk of poor health outcomes as they age due to late effects from past cancer treatments. Lifelong risk-based survivorship care is recommended; however, those who lack insurance, have lower income and education, or live in a socioeconomically disadvantaged area are less likely to receive this care, contributing to health disparities. Working toward the goal of improving equitable access to care for cancer survivors, the Stanford Cancer Survivorship Program has partnered with Jacob’s Heart, a nonprofit community organization that supports families of children with cancer in California’s Salinas Valley, a socioeconomically disadvantaged region with a large Latinx farmworker population and high rates of limited English proficiency. Jacob’s Heart provides material resources (financial, food, transportation) and psychosocial support (1:1 and group counseling, social activities) to families during treatment. Together with Jacob’s Heart, we are conducting a needs assessment in accordance with community-based participatory research principles. We present preliminary findings of a qualitative study designed to identify post-treatment concerns, needs, and barriers to cancer survivorship care in the Salinas Valley communities. Semi-structured interviews were conducted with Jacob’s Heart staff, adolescent/young adult (AYA) cancer survivors, and parents of cancer survivors. Eligible participants were ≥5 years post cancer diagnosis, ≥15 years of age, spoke English or Spanish, and received services from Jacob’s Heart during their treatment. The Jacob’s Heart team led recruitment using purposive sampling; 7 staff members, 19 AYA cancer survivors and 13 parents of cancer survivors were recruited. Interviews were conducted in-person or by video or telephone, in English or Spanish with professional interpreters if needed, and transcribed verbatim. Interview topics included demographics, post-treatment healthcare experiences, challenges and concerns related to prior treatment, sources of support, and suggestions for resources. Data were analyzed qualitatively using reflexive thematic analysis based on grounded theory and the constant comparative method. Preliminary findings indicate concerns among the staff around helping families adjust to life post-treatment and helping AYAs transition to independence as young adults. AYAs voiced communication challenges around survivorship topics (overwhelmed by too much information, worried about future health problems, yet hesitant to discuss with healthcare teams) and expressed the need for age-specific social connections and peer support. Further analysis of AYA and parent interviews is ongoing and will be presented at the time of the meeting. This study highlights the strength of a community-academic partnership to understand the lived experiences of AYA cancer survivors and their families and to identify opportunities to improve care. Findings will inform future collaborative interventions and projects that can be implemented in the community to address the unmet needs. Citation Format: Stephanie M. Smith, Caroline Pecos-Duarte, Evelyn Tolamatl Ariceaga, Elle Billman, Anmol Teer, Catherine Benedict, Mary Smith, Sandy Montes, Esmeralda Rivera, Daniela Ramirez, Heidi Boynton, Lidia Schapira. Understanding unmet needs of adult survivors of childhood cancer in California’s Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B042.

Adverse Childhood Experiences (ACEs) in Newly-Diagnosed Childhood and Adolescent/Young Adult (AYA) Cancer Patients with Hematologic Malignancies

Background and Aims: Childhood and adolescent/young adult (AYA) cancer survivors are at increased risk for emotional distress, chronic health conditions, and premature mortality compared to peers with no cancer history. Some, but not all, of this increased risk is explained by cancer- and treatment-related exposures. Because cancer treatment remains necessary to achieve cure, it is critical to identify and target other factors to reduce sub-optimal outcomes. Adverse Childhood Experiences (ACEs) are traumatic events occurring during childhood, such as experiencing violence and/or neglect, which are associated with poor mental health, chronic health conditions, and premature mortality in the adult general population. Little is known on how ACEs impact health in children and AYAs with cancer. Research indicates that otherwise healthy individuals exposed to ACEs experience fewer adverse health outcomes if they possess resilience, which can be learned. This provides a potential target for intervention. This pilot study aimed to identify demographic characteristics associated with ACEs and resilience as well as associations between ACEs, resilience, and the presence of chronic medical conditions, mental health issues, and substance abuse in children and AYAs with cancer.Methods: Childhood and AYA leukemia and lymphoma patients undergoing cancer treatment at the University of Chicago were included for analysis (N=38, 55.26% female, 50% non-Hispanic white, mean age at assessment 14.74±6.97 years). Participants ≤17 years old completed the study with one parent/caregiver. ACEs were measured using age-specific instruments adapted from the original ACEs study by Kaiser Permanente and the Centers for Disease Control and Prevention. Resilience was analyzed using age-specific instruments provided by the Resilience Research Centre, and resilience scores were categorized as low (≤62), moderate (63-70), high (71-76), and exceptional (≥77). For participants 0-11 years old, a parent/guardian completed the study on their behalf. 12-17 year old participants and their parent/guardian both completed the study, and participants over 18 completed the study alone. Descriptive statistics characterized demographic, biologic, treatment, and health behavior variables. The association between total scores for ACEs and resilience were measured using Pearson's correlation. Regression analysis assessed ACEs (logistic model) and resilience scores (linear model) adjusting for age, sex, race/ethnicity, household income, and insurance type. Participants were then stratified, and two sample t-tests compared potential outcomes based on ACE exposures.Results: 23 participants (60.53%) reported prior ACEs (mean total number of ACEs 1.45±1.77; range 1-7), and the mean resilience score for participants was 73.76±9.61 (range 49-85) indicating high resilience overall. Regression analyses showed the odds of reporting ACEs increased with age (OR: 1.18; 95% CI: 1.02-1.37), while resilience scores decreased with age (β=0.76; t(32)=-2.74, p=0.01) holding other variables constant. Sex, race/ethnicity, household income, and insurance type were not associated with ACEs or resilience scores. There was a strong negative correlation between the total number of ACEs and resilience, r(36)=-0.57, p<0.01; the total number of ACEs explained 32% of the variation in resilience scores. Compared to participants who did not report prior ACEs, those with ACEs were more likely to report chronic medical conditions, t(31.41)=-2.47, p=0.02, prior psychiatric diagnoses or mental health issues, t(34.16)=-2.13, p=0.04, as well as substance abuse t(31.41)=-2.47, p=0.02.Conclusions: ACEs were associated with endorsement of chronic medical conditions, mental health issues, and substance abuse in our sample of childhood and AYA patients currently receiving cancer treatment. As the total number of ACEs increased, resilience scores decreased for participants. The results of this study provide the groundwork for further investigations of ACEs and resilience in large cohorts of childhood and AYA cancer patients and survivors. This future work could provide valuable information for creating and implementing interventions designed for childhood and AYA cancer patients and survivors who have experienced ACEs, thus potentially reducing additional morbidity and premature mortality for these high-risk patients. DisclosuresNo relevant conflicts of interest to declare.

Like Prisoners in a War Camp: Adolescents and Young Adult Cancer Survivors' Perspectives of Disconnectedness From Healthcare Providers During Cancer Treatment.

Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs. The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment. This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method. Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination. Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority. AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.

Patient-reported symptoms, unmet needs, and psychosocial outcomes among adult survivors of pediatric and AYA cancer.

e22510 Background: Cancer survivors report symptoms that, if unaddressed, may result in unmet needs and difficulties in adaptation. We examined symptoms, unmet needs, and psychosocial outcomes in individuals diagnosed with pediatric (Peds) or adolescent young adult (AYA) cancers. Methods: Peds (n = 123) and AYA (n = 47) survivors presenting in an adult survivorship clinic completed patient-reported outcome measures for 13 symptoms, unmet need for intervention, and symptoms of depression and anxiety (HADS) Results: Participants were 56% female, primarily white (88%), single (60%), and college graduates (77%). Leukemia (35%) and Hodgkin Lymphoma (HL 21%) were the most common cancers, with HL more common among AYAs (p < .001). Most had received chemotherapy (95%) or XRT (60%) and 56% received both. A minority had undergone surgery (31%) or BMT (21%), with surgery more common among Peds (p < .05). 78% of participants reported at least 2 symptoms, while only 33% reported at least 2 unmet needs for intervention. Number of symptoms (M = 6.6, SD = 3.6) and unmet needs (M = 2.2, SD = 2.7) did not differ by diagnostic age, or by endorsement of any given symptom or need (all p > .05). Most common symptoms included anxiety/worry (68%), concentration problems (59%), and memory difficulties (56%) while the most common unmet needs included fatigue (32%), concentration problems (24%), and memory difficulties (23%). Elevated symptoms of anxiety (28%) were common, though symptoms of depression (7%) less so, and neither differed by diagnostic age group (p < .05). A minority of those with elevated anxiety (44%) or depressive symptoms (42%) reported an unmet need for intervention for these difficulties. Number of symptoms and unmet needs were associated with anxiety (both r > 0.39) and depression (both r > 0.39; all p < .001). Conclusions: Patient-reported symptoms are common among adult Peds and AYA cancer survivors, while unmet needs are less prevalent. Neither differs by age at diagnosis. Symptoms and unmet needs, however, may reflect anxiety and depressive symptoms for which survivors may be more willing to accept intervention than for emotional difficulties per se, representing an opportunity for intervention to improve outcomes.

Using Appearance-Based Messages to Increase Sun Protection in Adolescent Young Adult Cancer Survivors: A Pilot Study of Ultraviolet Light Photography.

Despite risk for secondary skin cancers, many adolescent and young adult (AYA) cancer survivors do not practice recommended sun protection (SP). Ultraviolet light photography (UVP), which demonstrates the negative impact of sun exposure on physical appearance, has been shown to increase SP in community AYA samples. This study of 58 AYA cancer survivors demonstrates that UVP is acceptable and not distressing to this population. Follow-up data on 23 AYAs demonstrated that those given UVP significantly improve their SP behaviors, while those receiving standard educational materials do not. Results demonstrate UVP is a promising tool for increasing SP in AYA survivors.

Cancer Survivors' Use of Fertility Preservation.

Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. The majority of men using FP used sperm banking (99%), whereas women used egg preservation (40%), embryo preservation (40%), and other methods (37%). On average, women paid more for FP than men (p < 0.001); however, costs for women significantly declined over time (p = 0.021). The study points to other areas for research in women's health, including the development of educational interventions with patients and providers to reduce gender disparities in FP and ensure timely patient-provider discussions related to fertility issues.