Adolescent Young Adult Survivors Research Articles

Social support dynamics within parent-AYA cancer survivor dyads in a rural, socioeconomically disadvantaged, majority Hispanic/Latino region.

10071 Background: Childhood cancer survivors and their parents often face psychological, financial, and informational challenges as survivors transition to adolescent/young adult (AYA) age, which can be exacerbated by socioeconomic disparities. Social support can positively impact the trajectory of AYA survivors and their parents by facilitating post-traumatic growth and wellbeing and reducing psychological distress. The aim of this study was to examine social support dynamics within AYA-parent dyads by comparing their support needs and gaps. Methods: This qualitative study was conducted in collaboration with a community-based organization (CBO) serving a predominately socioeconomically disadvantaged, Hispanic/Latino (H/L), and rural population of families affected by childhood cancer in California. English- and Spanish-speaking AYA childhood cancer survivors (≥15 years old, ≥5 years from diagnosis) and parents were interviewed. Transcripts were analyzed qualitatively using applied thematic analysis. Results: Seven AYA-parent dyads (6 H/L) participated in the study. AYAs (6 male, 1 female) were median (min-max) age 19 (16-23) and 14 years post diagnosis (6-17). Parents (1 male, 6 female) were predominantly Spanish-speaking (5/7). Forms of social support fell into emotional, instrumental (i.e. tangible assistance such as financial help), and informational domains. Although family and faith were shared sources of emotional support for parents and AYAs, parents were more likely to discuss fractured family support structures and unmet emotional needs. In contrast AYAs universally identified their parents as consistent sources of emotional support. Parents also more commonly discussed gaps in instrumental support, which were exacerbated by being a single parent and lacking a local extended family network after immigrating to the United States. Parents were frequently the primary source of informational support for their children and AYAs often lacked knowledge regarding their cancer diagnosis and treatment course. Two AYAs expressed ambivalence about receiving more survivorship-focused information due to it bringing up negative emotions around fear of recurrence. Parents frequently expressed worry about their child’s readiness to transition to adult care. Conclusions: Parents experienced gaps in emotional and instrumental social support that were not noted by AYAs, suggesting that parents protected their children from these experiences. Parents continued to serve as primary sources of informational support for AYAs even as they transitioned out of pediatric care. Our findings demonstrate the opportunity to build upon supportive parent-AYA relationships through dyad-focused education and counseling, which may improve readiness to transition to adult-focused survivorship care.

Cancer center-based follow-up among pediatric and adolescent/young adult cancer survivors: the role of a community-based organization and the social determinants of health.

Adherence to survivorship care is suboptimal among pediatric and adolescent/young adult (AYA) cancer survivors. We evaluated predictors of cancer center-based follow-up among pediatric/AYA cancer survivors, with an emphasis on social determinants of health (SDOH). This retrospective cohort study used electronic health record data at an academic medical center to identify patients aged 0-29years at last cancer treatment who completed treatment 2010-2019. Cancer center-based follow-up was defined by oncology or survivorship clinic visits through 12/31/2022. Multivariate logistic regression models (overall, ages 0-19 [pediatric], 20-29 [YA]) evaluated the association of demographics, clinical/treatment characteristics, and SDOH (insurance type, distance to cancer center, area deprivation index) with clinic attendance. Further modeling accounted for the service area of a community-based organization (CBO) that supports families of children with cancer. A total of 2210 survivors were included (56% pediatric, 44% YA; 66% non-White). Cancer center-based follow-up decreased from 94% 1-year post-treatment to 35% at > 5-7years. In adjusted analysis, AYAs had the lowest follow-up (5-7years post-treatment: OR 0.25 [0.15-0.41] for age 25-29; OR 0.25 [0.16-0.41] for age 20-24; OR 0.32 [0.20-0.52] for age 15-19). Survivors residing within the CBO service area were twice as likely to follow-up (OR 2.10 [1.34-3.29]). Among a diverse population, AYA survivors were vulnerable to loss to follow-up. Other SDOH were not consistently associated with follow-up. Support from a CBO may partly explain these findings. CBOs may strengthen survivorship follow-up within medically underserved communities. More research is needed to understand community support in survivorship.

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.

Substance use, substance use disorders, and treatment in adolescent and young adult cancer survivors-Results from a national survey.

Substance use can exacerbate cancer-related morbidity and mortality in adolescent/young adult (AYA) cancer survivors and place them at increased risk for adverse health outcomes. The objective of this study was to assess substance use, misuse, and substance use disorders [SUDs], as well as receipt of treatment for SUDs, among AYA cancer survivors. The authors used data from the National Survey of Drug Use and Health (2015-2018) to identify a nationally representative sample of AYAs aged 12 to 34 years. Outcomes assessed past-year tobacco, alcohol, marijuana, and illicit drug use; misuse of prescription opioids; SUDs; and SUD treatment. Multiple logistic regression was estimated to compare outcomes between 832 AYAs who reported a cancer history (survivors) and 140,826 AYAs who did not, adjusting sequentially for sociodemographic characteristics and health status. In regressions adjusting for sociodemographic characteristics, survivors were more likely than a noncancer comparison group of peers to use alcohol (6% relative increase; P = .048) and illicit drugs (34% relative increase; P = .012), to misuse prescription opioids (59% relative increase; P < .001), and to have a marijuana (67% relative increase; P = .011), illicit drug (77% relative increase; P < .001), or prescription opioid (67% relative increase; P = .048) SUD. When further adjusting for health status, survivors were still 41% more likely (P < .001) to misuse prescription opioids than noncancer peers. Among those with SUDs, survivors were more likely than peers to receive treatment (unadjusted, 21.5% vs 8.0%; adjusted, P < .05). AYA survivors were as likely as or more likely than noncancer peers to report substance use problems. These findings underscore the importance of interventions to reduce substance use and improve SUD treatment among AYA cancer survivors. The authors assessed substance use, misuse, and substance use disorders, as well as the receipt of treatment for substance use disorders, among adolescent and young adult (AYA) cancer survivors. In a nationally representative AYA sample, cancer survivors, despite their increased risk for morbidity and early mortality, were as likely as or more likely than peers without cancer to experience substance use problems. In particular, survivors had a significantly higher rate of prescription opioid misuse than peers. However, only 1 in 5 AYA survivors who experienced substance use disorders received treatment. These findings underscore the importance of interventions toward reducing substance use and improving access to treatment among AYA survivors.

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.

Adolescent and Young Adult Cancer Data in the Cancer Research Network

Background: Cancer is the leading cause of disease-related death among U.S. persons aged 15–39 years. Certain cancers are more common in this adolescent/young adult (AYA) population than in younger children or older adults. Research supported by initiatives like the Cancer Research Network (CRN) is needed to address late effects of cancer and its treatments among AYA survivors. The CRN consortium is funded by the National Cancer Institute to support cancer research at a subset of Health Care Systems Research Network sites. The data collected and maintained by CRN sites facilitate a variety of AYA cancer research opportunities.

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.

Patient-reported outcomes from adolescent/young adult (AYA) cancer survivors.

9605 Background: AYA survivors may experience unique toxicites compared to older survivors, and these may be difficult to measure. This Internet based study evaluates patient-reported outcomes duri...

Feasibility and Preliminary Findings From a Pilot Study of Allostatic Load in Adolescent–Young Adult Childhood Cancer Survivors and Their Siblings

Adolescent-young adult (AYA) childhood cancer survivors experience at least 2 types of chronic stress that can increase their risk for cardiovascular disease: the physiological stress of cancer and its treatment and the psychosocial stress inherent in the cancer experience. Their siblings can also experience ongoing cancer-related psychosocial stress. The composite biomarker allostatic load (AL) describes the cumulative impact of responses to chronic stress on interrelated organ systems and risk for stress-related diseases including cardiovascular disease. AL could be useful as a surrogate response indicator in research and care that aims to improve cardiovascular outcomes of childhood cancer. However, the measurement of AL has requirements to which AYA might not agree or adhere. This study aimed to (a) evaluate the feasibility of studying AL in AYA cancer populations and (b) briefly describe preliminary findings concerning psychological distress, cancer-related stress symptoms, health behavior and AL in AYA survivors and their siblings within the context of a small pilot study. The results support the feasibility of studying AL in AYA survivors and their siblings, and also suggest that further study of AL and risk for cardiovascular disease in both groups is indicated.

Post‐traumatic growth among an ethnically diverse sample of adolescent and young adult cancer survivors

Although some survivors of childhood cancer report significant psychosocial distress, many also report having derived benefits, or post-traumatic growth (PTG), from their cancer experience. This study examines PTG and its correlates among an ethnically diverse sample of adolescent/young adult (AYA) cancer survivors who have recently completed treatment. Survivors of childhood cancer (n = 94; 47% Hispanic), ages 11-21 and within 6 months of completing cancer therapy, were recruited from three pediatric cancer centers. Participants completed a structured interview that assessed demographics, PTG, post-traumatic stress symptoms, health-related quality of life, optimism, and depressive symptoms. Diagnosis/treatment information was collected from each patient's medical record. Multiple regression analyses were used to identify significant correlates of PTG. The majority of survivors reported positive growth. PTG was positively associated with psychosocial functioning and post-traumatic stress symptoms and inversely associated with physical functioning and depressive symptoms. PTG was significantly lower among survivors of bone tumors (vs. survivors of other cancers) and Hispanic survivors who primarily spoke English at home (vs. Hispanics who primarily spoke Spanish at home and non-Hispanics). PTG was not significantly related to age, sex, optimism, cancer treatment modality, duration of treatment, or treatment intensity. The AYA survivors commonly reported PTG in the immediate aftermath of cancer treatment. Findings regarding PTG among more acculturated Hispanic and bone tumor AYA survivors may help to inform risk-adapted clinical interventions, among those transitioning from active treatment to post-treatment surveillance, to mitigate negative long-term sequelae and enhance positive psychosocial adaptation from the cancer diagnosis and treatment.

Sexual side effects (SSE) reported by adolescent/young adult (AYA) versus older cancer survivors.

9120 Background: AYA survivors may experience unique SSE compared to older survivors, and these may be difficult to measure. This Internet based study evaluates patient-reported SSE during cancer survivorship. Methods: Data were gathered via a convenience sample frame from cancer survivors voluntarily utilizing a publically available, free, Internet-based tool for creation of survivorship care plans. Available at www.livestrongcareplan.com and through the OncoLink website, it provides customized guidelines for survivor care. During use of the tool, survivors are queried regarding late effects for which they are at risk. All data have been maintained with IRB approval. Results: 3222 cancer survivors answered queries regarding SSE - 392 AYA and 2830 older survivors. Median age of AYA survivors was 30 (range 18–35; median diagnosis age 27). Median age of older survivors was 54 (range 36–93, median diagnosis age 50). AYA survivors were 70% female and older were 76% female. In the AYA cohort, most common cancer diagnoses were hematologic (30%), breast (25%), and genitourinary (GU) (18%), compared to breast (44%), gastrointestinal (11%), and GU (10%) in the older cohort. Among males, erectile dysfunction (ED) was reported by 7% of AYA and 33% of older survivors. Of these, 86% and 94%, respectively, reported no ED prior to treatment; 14% and 93%, respectively, reported that they had not maintained an erection until completion of intercourse since cancer treatment, and 23% and 15%, respectively, reported that they could do so about 50% of the time. Retrograde/dry ejaculation was reported by 53% of AYA and 23% of older survivors. Among females, sexual concerns such as vaginal dryness and shrinkage were reported by 47% of AYA and 59% of older survivors. Conclusions: Male and female cancer survivors using this tool report significant SSE after cancer treatment. SSE reported by AYA versus older male survivors differ, with AYA survivors reporting more retrograde/dry ejaculation and older survivors reporting more ED. SSE appear prominent among female survivors of all ages. This tool offers a unique way for survivors to report their experiences; the data reported here may be of significant impact in future patient counseling and survivor care.