Health Insurance Literacy and Financial Toxicity in Adolescent and Young Adult Cancer Survivors.

65 Background: Adolescent and young adult (AYA) cancer patients (15-39 years of age) often report health insurance concerns and financial toxicity due to their life-saving treatment. AYAs often have limited experience with healthcare prior to their diagnosis, which may limit their understanding of health insurance concepts, coverage, and costs. To describe AYA health insurance experiences, expectations, and literacy, we conducted semi-structured interviews with AYA cancer patients and survivors. Methods: Eligible participants were 18-39 years, diagnosed with cancer, and insured. Participants were recruited through an AYA cancer navigation program in Utah from 10/2019-03/2020. Participants were purposively sampled to achieve equal age strata (18-25 vs. 26-39), as patients under 26 often remain on their parents policy. Individual interviews were recorded, transcribed, and analyzed. Inductive qualitative analysis was conducted to describe their experiences with and understanding of their insurance. We calculated descriptive statistics of demographics and the Health Insurance Literacy Measure (HILM), a continuous measure ranging from 0-84 (higher scores indicate higher comfortability and literacy). Associations of age (18-25 vs. 26-39) and policy holder (yes vs. no) with HILM score were evaluated with t-tests. Results: AYAs (N = 24) were nearly even by gender, female (58%), primarily heterosexual (92%), Non-Hispanic White (79%), and had at least some college (92%). Less than half of participants were policy holders (41.7%). Three themes emerged from analysis: 1) Lack of knowledge and experiential learning throughout treatment, 2) Unclear expectations of health insurance, and 3) Difficulties navigating coverage and the complex systems. Most AYAs were unaware of the specifics of their coverage and how their insurance plan impacted their costs. Most AYAs were surprised at the lack of coverage and high costs they encountered during treatment. Most AYAs experienced substantial difficulty navigating coverage issues, particularly the appeals process. The mean HILM score was 55.63 (SD = 10.06), no differences by age group or policy holder status. Conclusions: AYAs with cancer report substantial difficulty navigating the complex health insurance system and demonstrate low levels of health insurance literacy. Health insurance education focusing on insurance concepts (e.g., cost-sharing mechanisms) may help AYAs better manage costs and enable them to make informed health insurance decisions despite being at higher risk for financial toxicity.

Health insurance literacy is crucial for navigating the US healthcare system. Low health insurance literacy may be especially concerning for adolescent and young adult (AYA) cancer survivors. To describe AYAs' health insurance literacy, we conducted semi-structured interviews with AYA survivors, on and off of treatment. We interviewed 24 AYA cancer survivors (aged 18-39 years) between November 2019 and March 2020. Interviews were recorded, transcribed, and quality-checked. Using two cycles of structured coding, we explored AYAs' health insurance literacy and examined thematic differences by policy holder status and age. AYAs were 58.3% female, 79.2% non-Hispanic White, 91.7% heterosexual, and 62.5% receiving cancer treatment. Most participants had employer-sponsored health insurance (87.5%), and 41.7% were their own policy holder. Four themes emerged; in the first theme, most AYAs described beginning their cancer treatment with little to no understanding of their health insurance. This led to the three subsequent themes in which AYAs reported: unclear expectations of what their insurance would cover and their out-of-pocket costs; learning about insurance and costs by trial and error; and how their health insurance literacy negatively impacted their ability to navigate the healthcare system. Our findings, while requiring confirmation in larger samples and in other health systems, suggest that the health insurance literacy needed to navigate insurance and cancer care is low among US AYA survivors and may have health and financial implications. As the burden of navigating insurance is often put on patients, health insurance education is an important supportive service for AYA survivors on and off of treatment.

Background: Adolescent and young adult (AYA) cancer patients commonly report health insurance concerns and financial burden that emerge due to their cancer treatment. AYAs often have limited experience with health care prior to their cancer diagnosis, which may limit their understanding of health insurance concepts and affect their medical costs. As part of the development of an insurance navigation program, we conducted an evaluation of health insurance experiences, expectations, and literacy among a sample of AYA cancer patients. Methods: Eligible participants were 18-39 years of age with cancer, and currently insured. Participants were recruited in-person and online through a statewide AYA cancer navigation program in Utah. We selected the sample stratified on current age (18-25 and 26-39 years). Participants completed a brief survey and a semi-structured interview. We summarized demographic factors and the Health Insurance Literacy Measure (HILM), a continuous measure ranging from 0-84. The HILM score was examined by age (18-25 vs. 26-39 years) and insurance policy holder (yes vs. no) using t-tests. The semi-structured interviews were recorded, transcribed, and analyzed. Two cycles of inductive coding were applied to open-ended questions regarding health insurance knowledge, areas of confusion, their coverage expectations, and their experiences with medical costs. Results: Of AYA participants, N=13 were 18-25 and N=11 were 26-29 years; participants were female (58%) and Non-Hispanic White (79%), and most had completed at least had some college (92%). Less than half of participants were policy holders for their health insurance (41.7%). Mean HILM score was 55.63 (SD=10.06). There were no differences in the HILM measure by age or policy holder status. Three emergent qualitative themes included: 1) Lack of insurance knowledge affected experiences throughout treatment. While some AYAs understood the basics of their insurance coverage, most were unaware of the specifics of their plan, including how their coverage impacted their out-of-pocket costs. 2) Unclear expectations of health insurance. Most AYA participants were unsure what their health insurance should cover, but at the same time, were surprised about the lack of coverage and high costs. 3) Difficulties navigating coverage and the complexity of the health care system. Most AYAs reported struggled with handling insurance coverage issues, particularly when appeals were necessary to have their health care covered. Conclusions: AYAs with cancer report difficulty navigating the complexities of health insurance and lack understanding about what services their insurance should cover. Education focusing on insurance concepts (e.g., cost-sharing mechanisms such as deductibles) and areas where out-of-pocket costs could be managed (e.g., appeals process, in- vs. out-of-network services) could help AYA cancer patients make more informed health insurance decisions during their cancer treatment. Citation Format: Anne C. Kirchhoff, Karely Mann, Austin R. Waters, Echo L. Warner, Perla Vaca Lopez, Heydon K. Kaddas, Nicole Ray, Tomoko Tsukamoto, Doug Fair, Mark Lewis, Giselle K Perez, Elyse R. Park. Addressing gaps in health insurance literacy among adolescent and young adult cancer patients [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr IA21.

SY15-02: Health insurance and outcome disparities in adolescents and young adults with cancer

Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored. We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study, a cohort of 15 to 39 year olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used. Most AYA cancer survivors (95%), who were 15-35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI) = 1.7-13.8) or have had health insurance in the past year (OR = 4.0; 95% CI = 0.99-16.3). Cancer recurrence, lacking employment, and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. Eleven percent of all AYAs and 25% of AYAs who did not receive medical care in the past 12 months lost health insurance between the initial and follow-up surveys. AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance. Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

e19116 Background: Mental distress is associated with poor treatment adherence and adverse psychosocial outcomes, and cancer survivors, especially adolescent and young adults (AYA), may experience greater distress than older adults and the general population. We tested this hypothesis by examining the association between AYA vs. adult cancer survivors vs. the general population without a history of cancer, and mental distress. Methods: Using the 2014-2017 National Health Interview Surveys, 2,516 AYA cancer survivors (aged 15 – 39 years) were identified. We then used propensity score matching (matched on sociodemographics, comorbidities, smoking status and visit to mental health professional in past year) to create 2,516 older cancer survivors (aged ≥ 40 years); and 2,516 adults without cancer (general population) as the comparison groups. Mental distress (outcome of interest) was measured using the validated Kessler nonspecific mental/psychological distress (K6) scale. The 6-item K6 scale examines how frequently within the past 30 days an individual felt nervous, hopeless, restless or fidgety, worthless, sad, and that everything was an effort. Responses were summed to yield a score ranging between 0 and 24 and classified as none/low (0≤K6 < 5), moderate (5≤K6 < 13), and severe (K6≥13) mental distress. Two separate weighted multinomial logistic regression models estimated the odds of mental distress in study population (AYA vs. adult cancer survivors; and AYA vs. general population), adjusting for known covariates. Results: Mental distress was more prevalent among AYAs than adult cancer survivors (moderate: 24.0% vs 18.3%; and severe: 5.7% vs 4.2% [ P= .0002]); and the general population (moderate: 24.3% vs 16.7%; and severe: 6.1% vs 5.3% [ P< .0001]). Similarly, prevalence was higher among adult cancer survivors than the general population (moderate: 16.8% vs 13.6%; and severe: 3.2% vs 2.7% [ P= .0002]). In the multivariable multinomial analyses, AYAs had greater odds of mental distress (aORmoderate = 1.44; 95% CI 1.09, 1.89; and aORsevere = 1.77; 95% CI 1.21, 2.58) vs. adult cancer survivors. AYAs also had greater odds of mental distress vs. the general population (aORmoderate = 1.39; 95% CI 1.08, 1.79), but no significant difference in severe distress. Conclusions: About 1-in-4 AYA cancer survivors report some mental distress, and distress is more prevalent among this younger age group than older adults with cancer and the general population. Psychosocial care may be especially needed in this younger population to mitigate adverse psychosocial outcomes.

Purpose: Few studies have specifically targeted symptom management interventions for adolescent and young adult (AYA) cancer survivors. A greater understanding of AYA cancer survivors' experiences with cancer treatment-related symptoms would help develop age-appropriate oncology symptom management interventions. The purpose of this qualitative analysis was to explore AYA cancer survivors' experience with cancer treatment-related symptoms. Methods: Nineteen post-treatment AYA cancer survivors (18-39 years old) who self-reported moderate-severe cancer treatment-related symptom severity participated in video conferencing or telephone interviews. The questions in the interview guide queried participants to share their experience with cancer treatment-related symptoms. Inductive content analysis was used to identify themes from the interviews. Results: The themes that emerged from the interviews included (1) cancer treatment-related symptoms negatively affected AYA cancer survivors' quality of life (e.g., symptoms served as a reminder of cancer recurrence possibility); (2) AYA cancer survivors' attitudes and feelings about communicating cancer treatment-related symptom concerns to clinicians (e.g., patient-clinician communication was bolstered when AYAs perceived that symptoms were being taken seriously); (3) AYA cancer survivors are interested in oncology symptom management clinical trials, but logistical challenges are barriers to participation; and (4) AYA cancer survivors are interested in nonpharmacological treatments for symptom management. Conclusion: Results highlight the burden of cancer treatment-related symptoms on day-to-day life among post-treatment AYA cancer survivors. Future work is needed to identify nonpharmacological symptom management interventions, strategies to improve patient-clinician communication about symptoms, and strategies to increase the visibility and accessibility of symptom management clinical trials for AYA cancer survivors.

Adolescent and young adult (AYA) cancer survivors (ages 15-39 at diagnosis) experience challenges that heighten their risk of financial toxicity (i.e., the material, psychological, and behavioral burden of cancer-related costs). This scoping review characterizes the extent, range, and limitations of the literature on financial toxicity among AYA cancer survivors to inform future research and intervention design. Following standardized scoping review methodology, we systematically searched six databases for studies addressing financial toxicity or related constructs among AYAs within the past 10years. Eligible studies included quantitative, qualitative, and mixed-methods research without geographic restriction. Of 1722 records identified, 1362 underwent title and abstract screening and 118 underwent full-text review. Two reviewers independently screened studies, and study data were extracted and synthesized. Eighty studies met inclusion criteria. Most (n = 74, 92%) were cross-sectional, six (8%) were longitudinal. Half (n = 40, 50%) were quantitative observational analyses, and 41 (51%) included multiple cancer types. Financial toxicity was measured as an outcome in 63 studies (79%) and an exposure in 17 (21%). Prevalence of financial toxicity ranged from 15.5% to 89.5% (median 55%, IQR 38.2-67.1). Considerable heterogeneity was observed in measurement approaches; the Comprehensive Score for Financial Toxicity (COST) measure was used in 22 studies. Standardized measurement, longitudinal designs, and multilevel interventions are needed to mitigate burden and advance health equity. Financial toxicity is a pervasive concern for AYA cancer survivors globally. Through synthesizing the existing evidence on financial toxicity among AYA cancer survivors, this review identifies key gaps and guides future research and intervention development.

11104 Background: Research addressing the supportive care needs of diverse adolescent and young adult (AYA) cancer survivors remains underdeveloped relative to younger and older cancer survivor populations. Given their distinct developmental, psychosocial, and healthcare challenges, it is critical to characterize the unmet supportive care needs (USCN) specific to AYAs. This study aimed to compare self-reported USCN between AYA and older (>39 years old) cancer survivors to identify age-specific gaps in care and opportunities to improve outcomes. Methods: Between October 2019 and October 2024, 20,520 cancer survivors (n=1,287 AYA and n=19,233 non-AYA) at Sylvester Comprehensive Cancer Center completed the My Wellness Check (MWC) questionnaire. MWC is fully integrated and scored in real-time in the electronic health record, and evaluates 16 domains of supportive care needs (e.g., stress management, financial concerns, informational resources, transportation) alongside patient-reported outcomes (PROs; PROMIS measures of pain interference, fatigue, physical function, anxiety, and depression) and health-related quality of life (HRQOL; FACT-G7). Sociodemographic and clinical characteristics and the prevalence of USCNs were compared between AYA and other cancer survivors using chi-square and t-tests. Results: The AYA group had a higher proportion of females (64% vs. 51%), non-White (20% vs. 14%), Hispanic (56% vs. 44%), uninsured (4% vs. 3%), and unpartnered individuals (59% vs. 34%) compared to non-AYAs (all p s < 0.01). Across both groups, the most frequently reported USCNs were general cancer education (11%), coping with a cancer diagnosis (11%), and financial concerns (9%). AYAs were more likely to report at least one USCN compared to non-AYA survivors (33% vs. 28%). AYAs were also more likely to endorse needs related to coping with a cancer diagnosis (14% vs. 11%), financial concerns (12% vs. 9%), work-related issues (6% vs. 3%), oncofertility (10% vs. 1%), and childcare (3% vs. 0.5%) (all p s < 0.001). No significant differences were observed for other USCN, including transportation, housing, family problems, sexual health, spiritual concerns, access to medicines, and advance directives. Conclusions: While both AYA and non-AYA cancer survivors face substantial unmet supportive care needs, AYAs exhibit additional challenges, particularly in areas such as financial concerns, work-related issues, fertility preservation, and childcare. These findings align with prior research while uniquely emphasizing the unmet needs of a more ethnically diverse population. This study underscores the urgent need for targeted assessments and interventions to address the unique supportive care needs of AYA cancer survivors, ensuring equitable and age-appropriate survivorship care.

e24059 Background: There is a paucity of information on health outcomes of adolescent and young adult (AYA) cancer survivors outside of Northern Europe or North America. We compared long-term health outcomes of Israeli AYA cancer survivors to non-cancer individuals with similar demographics and access to healthcare, estimated the risk of developing chronic health conditions by cancer type, and compared the comorbidity burden in Israeli AYA survivors to AYA cancer survivors from the U.S. Methods: This was a retrospective cohort of 2-year cancer survivors diagnosed with invasive cancer between 15 to 39 years of age from 2000 to 2018 in Clalit Health Services (CHS), the largest payer-provider healthcare organization in Israel. Non-cancer CHS participants were matched 4:1 to cancer survivors on age, sex, ethnicity, and membership duration. Health conditions were limited to those requiring medical intervention. Incidence rates for health conditions were determined for the two cohorts, and Poisson regression was used to determine the incidence rate ratio (IRR) with associated 95% confidence intervals (CI). A sub-population of CHS AYA survivors was used to compare the incidence of chronic health conditions from the Israeli cohort to AYA cancer survivors from Kaiser Permanente Southern California (KPSC), using Standardized Incidence Rate (SIR). Results: There were 12,674 CHS AYA cancer survivors and 50,696 non-cancer participants. Among survivors, the mean age at diagnosis was 31.02 years (SD: 6.2), 61.7% were female, and 78.4% were Jewish. The most common cancer diagnoses were lymphoma (16.5%), breast (16.4%), and thyroid (14.0%). Cancer survivors were significantly more likely to have any (IRR 1.60 95%CI: 1.54-1.67) or multiple (IRR 1.82 95%CI: 1.72-1.94) chronic health conditions compared to non-cancer participants. Survivors had an increased risk across nearly all examined outcomes, with an especially higher risk for premature ovarian failure (IRR 6.02 95%CI: 2.14-16.91), osteoporosis (IRR 4.74 95%CI: 4.06-5.53), and cardiomyopathy (IRR 4.20 95%CI: 3.35-5.27). We also found clear differences in the risk of specific health conditions by cancer type. Compared to the KPSC cohort, CHS cancer survivors had an overall lower (SIR 0.82 95%CI: 0.79-0.84) incidence of developing any health condition, with noticeably lower incidences of hypertension, hyperlipidemia, chronic liver disease, but higher incidences of cardiopulmonary diseases and osteoporosis. Conclusions: AYA cancer survivors in Israel are at increased risk for developing chronic conditions, compared matched non-cancer individuals, but the overall incidence of was lower when compared to survivors living in the U.S. These findings may allow for refinement of surveillance recommendations for AYA survivors, taking into consideration regional differences in socio-demographics and cancer care.

The purpose of this exploratory sequential mixed methods study was to describe the sources of informal financial support used by adolescent and young adult (AYA) cancer survivors and how financial toxicity and demographicfactors were associated with different types and magnitudes of informal financial support. This analysis is part of a larger health insurance literacy study that included pre-trial interviews and a randomized controlled trial (RCT) for AYA cancer survivors. Eligible study participants were 18years of age, diagnosed with canceras an AYA (15-39years), insured, and for the RCT sample less than1year from diagnosis. Interview audio was transcribed, quality checked, and thematically analyzed. RCT baseline and follow-up surveys captured informal financial support use. Chi-squared and Fisher's exact tests were used to assess differences in informal financial support type use and frequency by financial toxicity and AYA demographics. A total of N = 24 and N = 86 AYAsparticipated in pre-trial interviews and the RCT respectively. Interview participants reported a variety of informal financial support sources including savings, community, family/friends, and fundraisers. However, only half of participants reported their informal financial support to be sufficient. High financial toxicity was associated with the most types of informal financial support and a higher magnitude of use. The lowest income group accessed informal financial supports less frequently than higher income groups. Our study demonstrates that AYA survivors experiencing financial toxicity frequently turn to informal sources of financial support and the magnitude is associated with financial toxicity. However, low-income survivors, and other at-risk survivors, may not have access to informal sources of financial support potentially widening inequities.

Purpose: Engagement of patients in their care can lead to better health outcomes, especially for adolescent and young adult (AYA) cancer survivors who experience mental and physical illnesses more often than noncancer adults. We examined how patient engagement in care influences health care expenses and use. Methods: AYA cancer survivors (n = 1162) and a comparison group of matched adults with no history of cancer (n = 2954) were identified from the 2011 to 2016 Medical Expenditure Panel Survey (MEPS) data. Medical expenditures and health care utilization associated with shared decision-making (SDM) measured by a self-administered questionnaire adapted from the Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CAHPS-CG) survey were evaluated using multivariable regression models. Results: AYA cancer survivors were more likely to report poor SDM compared with adults with no history of cancer (odds ratio = 1.31, 95% confidence interval [CI]): 1.06 to 1.62). AYA cancer survivors with poor SDM were more likely to report poor mental and physical health compared with AYAs with good SDM. AYA cancer survivors with poor SDM had $3037 (CI: $110 to $7032) in additional annual medical expenses and 4.86 (CI: 2.00 to 8.52) in additional office visits compared with AYA cancer survivors with optimal SDM, even after adjusting for chronic conditions and psychological distress. Conclusion: Our results highlight the substantial economic burden associated with poor SDM in AYA cancer survivors. Our research suggests that interventions to improve SDM in AYA cancer survivors may contribute to patients' positive perception of their health and result in AYAs seeking fewer medical services resulting in lower medical expenses.

Adolescent and young adult (AYA) cancer survivors experience psychological distress often because of cancer and its treatment. However, no prior studies have evaluated the additional medical expenditures and health care utilization associated with psychological distress in AYA cancer survivors. AYA cancer survivors and a comparison matched group of adults with no history of cancer were identified from 2011-2016 Medical Expenditure Panel Survey data. Medical expenditures and health care utilization were evaluated with multivariable regression models. AYA cancer survivors were more likely to have psychological distress (11.5% of 1757) than adults with no history of cancer (5.8% of 5227). The prevalence of psychological distress was found to be high many years after the diagnosis, with 11.2% reporting distress ≥20 years after their cancer diagnosis. AYA cancer survivors with psychological distress were more likely to smoke and have chronic conditions and were less likely to exercise regularly in comparison with AYAs with no history of psychological distress. AYA cancer survivors with psychological distress had additional annual medical expenses ($4415; 95% CI, $993-$9690), office visits (2.80; 95% CI, 0.23-6.15), and use of prescription medications/medication renewals (11.58; 95% CI, 5.70-19.47) in comparison with AYA cancer survivors without psychological distress. Additional annual medical expenses of psychological distress were $2600 higher in AYA cancer survivors than adults without a history of cancer ($1802; 95% CI, $440-$3791). These results highlight the substantial economic burden associated with psychological distress in AYA cancer survivors. This research could inform survivorship care plans and interventions addressing the psychological needs of AYA cancer survivors.

BACKGROUND Adolescent and young adult (AYA) cancer survivors are more likely to experience elevated depressive symptoms than older survivors and healthy age-matched peers. Despite the elevated risk of depressive symptoms in AYA cancer survivors and the existence of evidence-based interventions to address depression, it is unclear whether AYA cancer survivors can access support services. Digital tools are a potential solution to overcoming barriers to AYA cancer survivors’ unmet needs for psychosocial support, but they have not been tailored to the needs and preferences of this unique population. OBJECTIVE This study engaged AYA cancer survivors and their providers in the concept generation and ideation step of the user-centered design process through online co-design workshops. The goal was to generate concepts and ideas for a digital depression self-management tool tailored to AYA cancer survivors. METHODS We conducted 5 co-design workshops—4 with AYA cancer survivors and 1 with providers who serve them. Participants were asked to provide feedback on an existing digital mindfulness course using an “I like, I wish, I wonder” framework. Then, participants were asked “How might we...” questions focused on brainstorming ideas for how the digital tool might work. Participants brainstormed responses independently and then worked as a group to categorize and expand on their ideas. Co-design workshops were autotranscribed using Webex (Cisco) software. Transcripts underwent thematic analysis with additional context provided by the products created during the workshop. RESULTS Eight AYA cancer survivors (aged 15-37 years) and 4 providers (2 oncologists and 2 social workers) participated in co-design workshops. We identified 6 themes: barriers to engagement, desired content, preferences for content delivery, preferences for interface, features, and aspects to avoid. Each theme had 2-7 subthemes that we relied upon when making design decisions for the prototype. CONCLUSIONS Co-design workshops provided critical insights that informed the prototype development of a digital depression self-management tool tailored to AYA cancer survivors. Key takeaways that were integrated into prototype design include (1) using stories from other AYA cancer survivors to demonstrate concepts; (2) delivering content in brief lessons; and (3) using encouraging notifications, organizational tools, and reward systems to keep AYA cancer survivors engaged with the tool. Some of the themes identified in this study (eg, desired content and features) are consistent with known strategies for promoting user engagement and co-design work in other cancer survivors. However, this study extended previous research by identifying uniquely relevant strategies for tailoring to AYA cancer survivors, such as delivering content in brief sessions to overcome the time constraints AYA cancer survivors experience, providing opportunities for private expression, and maintaining an encouraging tone throughout the tool. These data were used to inform the prototype development of a digital depression self-management tool tailored to AYA cancer survivors.

PurposeThis study aimed to examine the (age-specific) informational needs and support sources used by Adolescent and Young Adult (AYA) cancer survivors throughout their cancer trajectory and socio-demographic and clinical factors associated with most common AYA-related informational needs.MethodsA cross-sectional questionnaire study was conducted among AYA cancer survivors (mean, 10.3 years after diagnosis, SD = 5.6). Informational needs and sources of support were examined via open questions and analyzed via a thematic inductive approach. Responses on informational needs were categorized according to the AYA anamnesis of the Dutch AYA “Young & Cancer” Care Network used in clinical practice. Chi-square and ANOVA tests were performed to assess differences in socio-demographic and clinical characteristics among AYA cancer survivors based on their varying levels of informational needs.ResultsIn total, 593 AYA cancer survivors were included (mean, 32.2 years at diagnosis, SD = 5.6). Most common informational needs were related to: family and children (23%), fertility and pregnancy (23%), work and reintegration (20%), peers with cancer (13%), and intimacy and sexuality (13%). Females, AYA cancer survivors diagnosed a longer time ago, those with a college/university education, those diagnosed with breast or hematological malignancies, and those treated with chemotherapy were more likely to have AYA-related informational needs. The most often used sources of support were healthcare professionals (76%), family (72%), social life (69%), and websites (47%).ConclusionsAYA cancer survivors have informational needs related to their life stage including topics like family and children, and fertility. Tailored information services and support are needed, including opportunities to connect with peers and support for relatives. By addressing the informational needs and sources of support for AYA cancer survivors, we can improve AYA care programs and empower AYA cancer survivors to better cope with the consequences associated with their disease.Implications for Cancer SurvivorsThis study will help to inform the content of AYA websites and platforms and help AYA cancer survivors, relatives, and healthcare professionals to become more aware of the needs of AYA cancer survivors and facilitate better use of relevant information and support services.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11764-024-01679-z.