Young Adult Cancer Survivors Research Articles

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis

PurposeAdolescent and young adult cancer survivors (AYAs) are at increased risk of long-term and late effects, and experience unmet needs, impacting their health-related quality of life (HRQoL). In order to provide and optimize supportive care and targeted interventions for this unique population, it is important to study HRQoL factors’ interconnectedness on a population level. Therefore, this network analysis was performed with the aim to explore the interconnectedness between HRQoL factors, in the analysis described as nodes, among long-term AYAs.MethodsThis population-based cohort study used cross-sectional survey data of long-term AYAs, who were identified by the Netherlands Cancer Registry (NCR). Participants completed a one-time survey (SURVAYA study), including the EORTC survivorship questionnaire (QLQ-SURV111) to assess their long-term HRQoL outcomes and sociodemographic characteristics. The NCR provided the clinical data. Descriptive statistics and a network analysis, including network clustering, were performed.ResultsIn total, 3596 AYAs (on average 12.4 years post diagnosis) were included in our network analysis. The network was proven stable and reliable and, in total, four clusters were identified, including a worriment, daily functioning, psychological, and sexual cluster. Negative health outlook, part of the worriment cluster, was the node with the highest strength and its partial correlation with health distress was significantly different from all other partial correlations.ConclusionThis study shows the results of a stable and reliable network analysis based on HRQoL data of long-term AYAs, and identified nodes, correlations, and clusters that could be intervened on to improve the HRQoL outcomes of AYAs.

Factors contributing to financial distress in young adults with cancer: Material resources, health, and workplace.

Financial distress is a primary concern for young adults with cancer. The aim of this study was to identify material resources, physical and psychological health, and workplace variables that are associated with financial distress in young adult cancer survivors. A cross-sectional study was conducted using the Cancer Survivor Employment Needs Survey. Participants were young adults (18-39 years of age) who lived in the United States and had a cancer diagnosis. Multivariable linear regression was used to model relations between financial distress and material resources, physical and psychological health, and workplace variables. Participants (N = 214) were mostly non-Hispanic White (78%), female (79%), and had a mean age of 31 years and 4.6 years post-diagnosis. Material resources, physical and psychological health, and workplace variables were all identified as contributing to study participants' financial distress. Among the young adults surveyed, financial distress was prevalent, and an array of problems were associated with financial distress. Oncology and rehabilitation providers should openly discuss finances with YAs with cancer and guide them to resources that can address their financial, benefits, and vocational needs to ultimately improve quality of life.

Understanding Barriers Faced by Rural Adolescent and Young Adult Cancer Survivors

Background and Hypothesis:The current 5-year survival rate for adolescent and young adult (AYA) cancer diagnoses is 85.8%. However, AYA cancer survivors face many challenges including loss of insurance, infertility, sexual health concerns, physical disability, education barriers, housing instability, food insecurity, and decreased financial well-being. Survivors in rural areas may face additional challenges, such as lack of access to cancer centers, tailored resources, and networks of fellow AYA cancer survivors that may be available in large cities. The study goal was to better understand specific barriers to survivorship care for this rural population, using a comprehensive interactive workbook distributed to cancer survivors in Southwest Indiana.
 Methods:A prototype workbook was distributed to 42 AYA survivors in southwest Indiana. Follow-up interviews were conducted with 11 individuals. Interviews with the first wave of eligible participants (n=7) provided perspectives on the workbook, helped identify potential improvements, and offered further insight into their survivorship experiences. These eligible participants were also invited to participate in an online forum to facilitate group discussions on potential improvements to the workbook. Responses were evaluated through affinity mapping to identify common themes.
 Results:AYA cancer was found to have a lasting impact on physical health, mental health, and relationships for many of the AYA survivors. Importantly, only 27% of participants who completed the workbook responded “yes” to having received a survivorship care plan, suggesting barriers in communication between survivors and healthcare providers. Regarding overall health, the three largest barriers identified by cancer survivors in rural southwest Indiana were insurance coverage, mental health services, and the availability of services needed.
 Conclusion:To strengthen survivorship care to rural survivors, our study suggests a need for better distribution and explanation of survivorship care plans, as well as increased access to stable insurance, medical services, and mental health services.

Health Care Transitions Among Adolescents and Young Adults With Cancer.

Survivors of adolescent and young adult (AYA) cancers, defined as individuals diagnosed with a primary malignancy between age 15 and 39 years, are a growing population with unique developmental, psychosocial, and health-related needs. These individuals are at excess risk of developing a wide range of chronic comorbidities compared with the general population and, therefore, require lifelong, risk-based, survivorship care to optimize long-term health outcomes. The health care needs of survivors of AYA cancers are particularly complicated given the often heterogeneous and sometimes fragmented care they receive throughout the cancer care continuum. For example, AYA survivors are often treated in disparate settings (pediatric v adult) on dissimilar protocols that include different recommendations for longitudinal follow-up. Specialized tools and techniques are needed to ensure that AYA survivors move seamlessly from acute cancer care to survivorship care and, in many cases, from pediatric to adult clinics while still remaining engaged in long-term follow-up. Systematic, age-appropriate transitional practices involving well-established clinical models of care, survivorship care plans, and survivorship guidelines are needed to facilitate effective transitions between providers. Future studies are necessary to enhance and optimize the clinical effectiveness of transition processes in AYA cancer survivors.

Supporting Personal Growth in Childhood, Adolescent and Young-Adult Cancer Survivors Through Challenges in Nature - A Qualitative Study of WAYA Wilderness Programme Participation.

Childhood, adolescent and young-adult (AYA) cancer survivors often experience health problems due to late or long-term effects of their cancer or the treatment thereof. The general population gains health benefits from immersion in nature, and nature-based programmes seem to be an intervention that can promote health among childhood and AYA cancer survivors. To explore the impact of the WAYA wilderness programme on the health of childhood and AYA cancer survivors. The study had a qualitative approach, with data from individual interviews (n = 18) 3months after completion of the WAYA programme. In addition, case report data was collected during follow-up talks (1, 2 and 12months after the programme) (n = 19). The WAYA programme consisted of an 8-day expedition, followed 3months later by a 4-day base camp. The programme included activities such as hiking, backpacking, kayaking, rock climbing, bushcraft and mindfulness. Data was analysed according to a qualitative content analysis. The consolidated criteria for reporting qualitative research (COREQ) were followed. An overarching theme was identified: "Personal growth from challenges in nature supported by deep connections with others". In 4 additional themes, participants' experiences describe how deep personal connections arose, as they developed a feeling of being able and competent in nature. Nature provided a space that supported relaxation and respite from everyday challenges and stimuli, which also led to an experience of being more connected to nature. The WAYA programme was experienced as being of support to childhood and AYA cancer survivors. The programme provided them with skills and tools to be safe in nature. When connected to nature, the participants developed trust and self-confidence, personal growth, relaxation and recovery from stress. Their engagement in outdoor activities continued after completion of the programme, when they returned to everyday life at home.

A Phenomenological Qualitative Exploration of Mind-Body Therapy Use and Effectiveness Among Young, Middle, and Older Adult Cancer Survivors.

Having been diagnosed with and treated for cancer can have negative psychosocial repercussions that may differ across the lifespan. Mind-body therapies (MBTs), such as tai-chi/qigong (TCQ) or mindfulness-based cancer recovery (MBCR), have shown promise in decreasing negative psychosocial outcomes in cancer survivors, but few studies have explored potential differences in MBT use and effectiveness across age groups. A descriptive phenomenological qualitative design was used. Participants included young (18-39), middle (40-64), and older (65+) adult cancer survivors who were diagnosed with any type of cancer and had participated in Mindfulness-Based Cancer Recovery (MBCR) or Tai Chi/Qigong (TCQ) MBTs. Semi-structured qualitative interviews explored participants' experiences in MBTs and these were analyzed using descriptive phenomenological analysis. Among the interviews (n = 18), young (n = 6), middle-aged (n = 8), and older (n = 4) adults participated. 5 themes emerged: influences in joining the program, unique lifestyles, positive class experiences, use of media, and program impacts. Though all age groups benefitted from MBT participation, variations between age groups with respect to the benefits received and motivations for joining the program were observed. MBTs had beneficial physical and mental health effects on survivors of all age groups. These benefits were particularly connected to the ongoing life stresses common to each age cohort, such as relief from work and family roles for young adults or support during retirement transition for older adults. Hence, access to MBT programs may be beneficial as part of the survivorship plan for patients and the recruitment strategies or content can be adapted by MBT providers to better target and support age-specific groups. More research is required with a larger sample.

Long-term second primary cancer risk in adolescent and young adult (15-39 years) cancer survivors: a population-based study in the Netherlands between 1989 and 2018

Few studies have comprehensively investigated the long-term second cancer risk among adolescent and young adult (AYA, aged 15-39 years) cancer survivors. This study investigated the long-term second cancer risk by including the full range of first and second cancer combinations with at least 10 observations in the Netherlands between 1989 and2018. First and second primary cancer data of all 6-month AYA cancer survivors were obtained from the nationwide population-based Netherlands Cancer Registry. Excess cancer risk compared to the general population was assessed with standardized incidence ratio (SIR) and absolute excess risk (AER) statistics up to 25 years after diagnosis. Cumulative incidences were estimated, using death as a competing risk factor. Analyses were carried out with and without applying multiple cancer rules. The cohort included 99 502 AYA cancer survivors. Male survivors had a 2-fold higher risk of developing any cancer compared to the general population, whereas this was around 1.3-fold in females. AERs were 17.5 and 10.1 per 10 000 person-years for males and females. The long-term excess risk of cancer was significantly higher for most first and second primary cancer combinations, but comparable and lower risk estimates were also observed. Application of the multiple cancer rules resulted in a noticeable risk underestimation in melanoma, testicular, and breast cancer survivors. Risk outcomes remained similar in most cases otherwise. The cumulative incidence of second cancer overall increased over time up to 8.9% in males and 10.3% in females at 25 years' follow-up. Highest long-term cumulative incidences were observed among lymphoma survivors (13.3% males and 18.9% females). AYA cancer survivors have a higher cancer risk compared to the general population for most cancers up to 25 years after their initial cancer diagnosis. Additional studies that investigate risk factors for the specific cancer type combinations are needed to develop personalized follow-up strategies.

Impact of work-related changes on health-related quality of life in adolescent and young adult cancer survivors

Abstract Background: Adolescent and young adult (AYA) cancer survivors often face unique work-related challenges and poor health-related quality of life (HRQOL). This study aimed to (1) assess work-related changes after cancer diagnosis in AYA cancer survivors and (2) explore the association between work-related changes and HRQOL. Methods: In a cross-sectional web-based survey, AYA cancer survivors were assessed for work-related changes after cancer diagnosis and their HRQOL using the EuroQoL 5-Dimension 5-Level scale (EQ-5D-5L). The percentage of AYA cancer survivors who had experienced work-related changes was calculated. Multiple regression analysis was used to examine the association between EQ-5D-5L scores and work-related changes, demographics, and clinical variables. Results: The participants were 206 AYA cancer survivors (180 women) with a mean age of 33.7 years (SD 4.3, range: 22–39 years). Among them, 115 (56%) had experienced work-related changes, including 53 (25.7%) who had quit their jobs after their cancer diagnosis. The EQ-5D-5L score (mean: 0.79) was lower in the AYA cancer survivors than in the general population. Moreover, AYA cancer survivors who experienced work-related changes had significantly lower EQ-5D-5L scores compared with AYA cancer survivors who did not (0.75 vs 0.84, P < .001). Multiple regression analyses indicated that lower income, reduced working hours, and lower performance status, as measured by the Eastern Cooperative Oncology Group Scale, were associated with lower EQ-5D-5L scores. Conclusions: More than half of the AYA cancer survivors reported work-related changes and had lower HRQOL. Identifying potential interventions supporting AYA cancer survivors with low physical and financial status may be useful for improving their HRQOL.

Changes and predictors of social support in adolescent and young adult cancer survivors-Results of a 7-year longitudinal study.

As social support has been shown to have beneficial effects on coping with cancer, our study aims to close the research gap on perceived social support in adolescent and young adult (AYA) cancer survivors. AYAs evaluated their perceived positive social support (PS) and detrimental interactions (DI) by completing the Illness-Specific Social Support Scale (ISSS-8) upon completion of acute treatment (t1) as well as 1year (t2) and 7years (t6) later. Temporal changes of social support were examined. Sociodemographic, psychological and medical factors were investigated as predictors for PS and DI by using mixed effects models. We analyzed data from 319 cancer survivors (74.9% women). At baseline, survivors reported an average score of 13.73 (SD=2.52) for PS and 3.92 (SD=2.85) for DI. Average perceived PS changed over time, while DI remained stable. Males, AYAs without a partner and AYAs with clinically meaningful anxiety or depression levels reported fewer PS. Higher effort to cope with the disease and clinically significant anxiety and depression levels were associated with more perceived DI. Existing social networks and perceived social support should be evaluated regularly in AYA-cancer survivorship. The identification and discussion of mental health of AYAs should also be a standard component in survivor consultations both during treatment and follow-up care, as elevated depression and anxiety levels were associated with fewer PS and more perceived DI.

Co-production of a rehabilitation programme for young adult cancer survivors

Introduction: Globally, the focus on user involvement in health research has increased substantially. In Denmark, it is still at an early stage, with individual researchers being met with increasing demands without having much experience, guidance, or good practices to act upon. We are a group of researchers affiliated with User Perspectives and Community-based Interventions at the University of Southern Denmark and the Center for Research with Patients and Relatives (ForSa-P) at the Odense University Hospital. We work with patients and relatives in several aspects of our work – research and teaching; we share our experiences and learning in a joint session.
 This presentation describes a co-creation process of developing a rehabilitation programme for young adult cancer survivors (YACS)
 Background: Because of the cancer and late effects of treatment, YACS face numerous age-specific physical, psychological, existential, and social issues impacting participation in everyday life and decreasing their health-related quality of life (HRQoL). Rehabilitation may improve participation in life roles, leisure activities and work and thus, heighten HRQoL. However, YACS rehabilitation needs are not being adequately met and multicomponent age-specific rehabilitation for YACS is limited.
 Objective: To develop an evidence-based, age-specific, multicomponent, and peer-based rehabilitation programme involving YACS and relevant stakeholders aiming to improve YACS participation in everyday life and their HRQoL.
 Methods: The development process of the programme drawn on the Medical Research Council UK framework for developing and evaluating complex interventions and is inspired by Hawkins et al.’s three-staged framework for co-production. From September 2019 to March 2023, YACS, professionals and researchers co-developed a rehabilitation programme through three stages: 1) Evidence review and stakeholder consultations; 2) Co-production of the intervention by involving users in four workshops, and 3) Articulating the programme theory, developing an intervention manual, recruitment strategy and referral pathways and selecting outcome measures. Key findings from each stage were incorporated into the subsequently stage.
 Results: We developed a comprehensive goal-oriented and peer-based rehabilitation programme called the Young Adults Taking ACtion (YATAC). The programme draws on a person-centered approach, the Social Cognitive Theory, and John Dewey’s learning theory. It consists of nine components delivered by an interdisciplinary team: 1) Need assessment, 2) Goal setting, 3) Everyday life, 4) Physical activity, 5) Psychological issues, 6) Work and education, 7) Sexuality and relationship, 8) Rights and finance, 9) Friends and Family and 10) Peer-to-peer support. Further, outcome measures for the programme were chosen, recruitment strategies were described, and referral pathways were identified. The evaluation showed advantages and disadvantages and future points to pay attention to when participating in a co-production process. 
 Conclusions: A multicomponent rehabilitation programme for YACS was developed involving the preferences and needs of YACS and stakeholders. Using co-production in the whole process of developing the programme will most likely lead to better evaluation and implementation in clinical practice. In addition, the comprehensive description of the development process and the knowledge derived from the process can inform future research of how to involve users in the development of rehabilitation interventions. Next step will be to feasibility test the programme.

Innovative strategies to predict and prevent the risk for malnutrition in child, adolescent, and young adult cancer survivors.

Children, adolescents, and young adult cancer survivors (CAYAs) constitute a growing population requiring a customized approach to mitigate the incidence of severe complications throughout their lifetimes. During cancer treatment, CAYAs cancer survivors undergo significant disruptions in their nutritional status, elevating the risks of mortality, morbidity, and cardiovascular events. The assessment of nutritional status during cancer treatment involves anthropometric and dietary evaluations, emphasizing the necessity for regular assessments and the timely identification of risk factors. Proactive nutritional interventions, addressing both undernutrition and overnutrition, should be tailored to specific age groups and incorporate a family-centered approach. Despite encouraging interventions, a notable evidence gap persists. The goal of this review is to comprehensively examine the existing evidence on potential nutritional interventions for CAYAs cancer survivors. We explore the evidence so far collected on the nutritional intervention strategies elaborated for CAYAs cancer survivors that should target both undernutrition and overnutrition, being age-specific and involving a family-based approach. Furthermore, we suggest harnessing artificial intelligence (AI) to anticipate and prevent malnutrition in CAYAs cancer survivors, contributing to the identification of novel risk factors and promoting proactive, personalized healthcare.

Preference of Young Adult Cancer Survivors for In-Person Versus Telemedicine Cancer Survivorship Visits.

Young adult (YA) cancer survivors face barriers to follow-up care, which can be exacerbated by living in a rural location. Telemedicine may mitigate these barriers, but little is known about the preferences of YA survivors for telemedicine or in-person survivorship visits. We surveyed 57 YA cancer survivors in a rural state to assess their preference for survivorship visits. Forty-six percent of respondents preferred an in-person visit while 16% preferred telemedicine. The remaining 39% reported "it depends" or were undecided. In-person visits were preferred when stratified by rural versus urban location. This work can be used to inform survivorship delivery systems.

European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5years after diagnosis: a PanCare guideline.

Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of cancer treatment throughout their lives. There is a lack of evidence-based guidelines on optimal surveillance strategies for the period from the end of treatment to 5years after diagnosis. We aimed to address this gap by developing recommendations for short-term surveillance of health problems based on existing long-term follow-up (LTFU) care guidelines. The guideline working group, consisting of healthcare professionals, parents and survivor representatives from 10 countries, worked together to identify relevant health problems that may occur in survivors between the end of treatment and 5years after diagnosis and to develop recommendations for short-term surveillance of health problems. The recommendations were drawn from existing LTFU guidelines and adapted where necessary based on clinical expertise. The working group developed 44 recommendations for short-term surveillance of health problems, which were divided into four categories based on the level of surveillance required: awareness only (n = 11), awareness, history and/or physical examination without surveillance test (n = 15), awareness, history and/or physical examination with potential surveillance test (n = 1) and awareness, history and/or physical examination with surveillance test (n = 17). The development of a guideline for short-term surveillance of health problems fills a critical gap in survivorship care for CAYA cancer survivors, providing much-needed support immediately after treatment up to 5years after diagnosis. This guideline will support healthcare professionals to provide appropriate follow-up care and improve the quality of life of CAYA cancer survivors.

Risk of chronic health conditions in lesbian, gay, and bisexual survivors of adolescent and young adult cancers.

In the general population, individuals with minoritized sexual orientation and gender identity have a higher burden of chronic health conditions than heterosexual individuals. However, the extent to which sexual orientation is associated with excess burden of chronic conditions in adolescent and young adult cancer survivors (AYACS) is unknown. Lesbian, gay, and bisexual (LGB) AYACSs, LGB individuals without a history of cancer, and heterosexual AYACSs were identified by self-reported data from the cross-sectional National Health Interview Survey (2013-2020). Socioeconomic factors and the prevalence of chronic health conditions were compared between groups using χ2 tests. Logistic regression methods were used to determine the odds of chronic conditions by socioeconomic factors within and between survivor and comparison groups. One hundred seventy LGB cancer survivors, 1700 LGB individuals without a history of cancer, and 1700 heterosexual cancer survivors were included. Compared with heterosexual survivors, LGB survivors were less likely to be married (p=.001) and more likely to have never been married (p<.001). LGB survivors were more likely to have incomes between 100% and 200% of the federal poverty level than LGB individuals without a history of cancer (p=.012) and heterosexual survivors (p=.021) and were less likely to report incomes >200% the federal poverty level. LGB survivors had higher odds of chronic health conditions than LGB individuals without a history of cancer (odds ratio, 2.45; p<.001) and heterosexual survivors (odds ratio, 2.16; p=.003). LGB AYACSs are at increased risk of having chronic health conditions compared with both LGB individuals without a history of cancer and heterosexual AYACSs.

Abstract A120: Social risks among adolescent and young adult cancer survivors in a US-based integrated delivery system

Abstract Purpose: Adolescent and young adult (AYA; diagnosed between the ages of 15-39) cancer survivors are at increased risk of experiencing social risk factors, including financial toxicity, food, housing, and transportation difficulties associated with cancer diagnosis and treatment. Screening for social risks has been shown to be associated with improved health and healthcare outcomes. There is an increased emphasis on implementing social risk screening as part of routine healthcare. However, oncology practices do not routinely assess for and assist patients with social risks, thereby missing a crucial aspect of cancer care. This study aimed to describe the prevalence of social risks among AYA cancer survivors in a United States-based integrated health system. Methods: We analyzed data from 330 AYA members of Kaiser Permanente Northwest (Northwest Oregon and Southwest Washington) who were diagnosed with cancer, either pre- or post-completion of 1 or more social risk screenings between January 1, 2017, to January 30, 2022 (first screening defined as the index date). Four social risk domains (financial hardship, food insecurity, housing instability, and transportation difficulties) were assessed based on patient self-report to indicate the presence or absence of each domain (binary: yes or no). A binary, composite variable was created to assess any social risk (i.e., the presence of any social risk) versus no social risk. Descriptive statistics, including a chi-square test and t-test, were used to compare the prevalence of social risks among AYA cancer survivors overall and by time since cancer diagnosis. Results: Of the 330 patients, the majority were female (n=229, 69%), identified as non-Hispanic white (n=251, 76%), and had an Elixhauser comorbidity index score of 3+ conditions (n=115, 35%). Most AYAs were diagnosed with cancer between the ages of 30-39 (n=181, 59%), and 43% of the AYAs had been diagnosed &amp;lt;1 year (n=141). Overall, the majority of AYA members were diagnosed with cancer prior to their social risk screening (n=301, 91%). We found that nearly one-quarter of patients reported at least one social risk (n=64, 19%), with financial hardship as the most common (14%), followed by food insecurity (9%), housing instability (8%), and transportation difficulties (3%). A greater proportion of patients diagnosed &amp;lt;1 year reported having &amp;gt; 1 social risk (40%), followed by patients diagnosed 1 to &amp;lt;5 years (37%) and patients who had been diagnosed 5+ years (23%). Conclusion: Despite the critical need for strategies to identify and address social risks within the oncology setting, few studies have explored the prevalence and impact of social risks among AYA cancer survivors. Our results suggest that AYA cancer survivors experience the highest burden of social risks proximal to a cancer diagnosis. This work demonstrates the importance of assessing and addressing social risks for AYA cancer survivors. Future studies are needed to evaluate the longitudinal effects of social risks on AYA cancer survivors’ healthcare use and subsequent health outcomes. Citation Format: Carol Y. Ochoa-Dominguez, Kimberly A. Miller, Maria Elena Martinez, David M. Mosen, John F. Dickerson, Ana I. Velázquez Mañana, Matthew P. Banegas. Social risks among adolescent and young adult cancer survivors in a US-based integrated delivery system [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A120.

Abstract B021: Trends in psychological distress among adult survivors of childhood, adolescent and young adult cancers: Analysis of 2008-2018 National Health Interview Survey data

Abstract Background: Cancer survivors diagnosed at childhood, adolescent and young adults age face psychological distress in the form of depression, anxiety, and panic attacks. In addition, psychological distress has been found to have an impact on the medical expenditures of cancer survivors. Previous studies have examined psychological distress in survivors of childhood, and young adult cancers (AYA) and found them to be high, whether this increasing or decreasing over the years is unknown. The aim of our study was to examine trends in psychological distress among survivors of childhood AYA cancers. Methods: We analyzed the 2008-2018 National Health Interview Survey (NHIS) data, a cross-sectional household interview survey of the US civilian, non-institutionalized population that uses a multistage area probability design. We identified individuals (n=6,175) who were diagnosed with cancer between 0 to 39 years of age. Psychological distress was assessed using the validated Kessler 6-item scale. Using a 30-day reference period, respondents’ rate how often they felt nervous, hopeless, restless or fidgety, so sad that nothing could cheer them up, that everything was an effort, and worthless. Response options include ‘never’, ‘a little of the time’, ‘some of the time’, ‘most of the time’, and ‘all of the time’. Responses were scored and added to produce a range of 0–24. We defined mild distress as a score of less &amp;lt;5, moderate distress as a score between 5-13 and severe distress as a score of &amp;gt;13. Joinpoint regression estimated yearly increases/decreases in psychological distress using annual percent changes. Results: Overall, the proportion of childhood and AYA cancer survivors with moderate distress decreased slightly between 2008 and 2014 but increased from 2014-2018 by 5% per year, though not statistically significant. However, the proportion of childhood and AYA cancer survivors with mild and severe distress remained relatively stable throughout the study period. The proportion of females and males with moderate distress increased by an average of 5% and 6% annually from 2014-2018 respectively, however, the increase was not statistically significant. The proportion of childhood and AYA cancer survivors who were married with moderate distress increased by 8% from 2014-2018 whereas survivors who were never married with severe distress decreased by 29% in the same time range. Conclusion: There is an increase in the number of survivors with moderate psychological distress while mild psychological distress has declined from 2014-15 onwards. Severe distress has remained relatively stable in all the years. Citation Format: Pranali G. Patel, Chaitali S Dagli, Nosayaba Osazuwa-Peters, Mrudula Nair, Dina K. Abouelella, Oluwole A. Babatunde, Shreya P. Ramkumar, Eric Adjei Boakye. Trends in psychological distress among adult survivors of childhood, adolescent and young adult cancers: Analysis of 2008-2018 National Health Interview Survey data [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B021.

Abstract B094: Geographic accessibility to obstetricians and gynecologists is associated with incidence of live birth among Black adolescent and young adult female cancer survivors in Texas

Abstract Objective: To assess incidence of live birth after cancer diagnosis among Black adolescent and young adult women (AYA) age 15-39 years at diagnosis, and evaluate whether incidence varies by exposure to racial residential segregation, neighborhood poverty, or geographic accessibility to obstetricians/gynecologists. Methods: Black AYA women diagnosed with cancer between January 1, 1995 and December 31, 2015 were identified using population-based data from the Texas Cancer Registry. These data were linked with live birth certificates through December 31, 2016 to identify the first live birth after diagnosis. We measured three neighborhood characteristics using the 2010 U.S. Census: 1) Black racial residential segregation, using the Index at the Concentration of Extremes; 2) percent of the population living in poverty; and 3) geographic accessibility to obstetricians/gynecologists, calculated using National Provider Identifier data as the supply of healthcare and U.S. Census data as the demand for healthcare. We estimated cumulative incidence of live birth accounting for the competing risk of death, overall and by low vs. high (≥ 20%) poverty and sample-based quartiles of racial residential segregation and geographic accessibility. Results: We identified 689 first live births to 7,921 Black AYA women after cancer diagnosis. Two-thirds of the sample were age 30 years or older at diagnosis: 27.3% were aged 30-34 and 45.6% were aged 35-39. The most common cancer types were breast (34.3%), gynecologic (16.4%), lymphoma (9.8%), thyroid (8.5%), and gastrointestinal (7.5%). Stage at diagnosis was as follows: local (39.6%), regional (27.8%), distant (19.3%), and missing (13.4%). Five- and ten- year cumulative incidence of live birth after cancer diagnosis was 6.3 (95% confidence interval [CI]: 5.8-6.9) and 9.1 (95% CI: 8.4-9.8), respectively. Incidence of live birth was not associated with racial residential segregation or neighborhood poverty. Cumulative incidence of live birth varied by geographic accessibility to obstetricians/gynecologists (p=.046); however, nonlinear patterns were observed starting around five years after diagnosis, such that those residing in quartiles 1 (lowest accessibility) and 3 had lower incidence of live birth compared to those in quartiles 2 and 4 (highest accessibility). Discussion: To our knowledge, this is the first study examining the association of neighborhood characteristics and incidence of live birth in a population-based sample of Black AYA women after cancer diagnosis. We did not observe associations for racial residential segregation or neighborhood poverty. This may indicate that characteristics such as current health status, types of treatment received, or treatment side effects are more relevant for live birth after diagnosis. Geographic accessibility to obstetricians/gynecologists was associated with live birth, but in a nonlinear fashion. Future analyses will assess spatial patterns and potential confounders, such as urban or rural residence, which may account for non-linearity in this association. Citation Format: Sandi L. Pruitt, Jennifer S. Wang, Kevin A. Henry, Lynn N. Ibekwe, Caitlin C. Murphy. Geographic accessibility to obstetricians and gynecologists is associated with incidence of live birth among Black adolescent and young adult female cancer survivors in Texas [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr B094.

Sleep Treatment Education Program for Young Adult Cancer Survivors (STEP-YA): Protocol for an Efficacy Trial.

Young adult cancer survivors (YACS) are at elevated risk for chronic insomnia, even years after completing treatment. In addition to potential health consequences, insomnia can interrupt social, educational, and vocational development just as they are trying to "make up" for time lost to cancer. Cognitive behavioral therapy for insomnia (CBTI) is recommended as first-line treatment for insomnia but remains largely unavailable to YACS due to several barriers (ie, shortage of trained providers, geographic limitations, financial limitations). Traditional CBTI has not been adapted to meet YACS' unique developmental and circadian challenges. To improve availability of effective behavioral insomnia treatment for this population, we developed the Sleep Treatment Education Program for Young Adult Cancer Survivors (STEP-YA), a low-intensity educational intervention delivered virtually online. In this phase 2 "proof of concept" trial, primary aims are to test the efficacy of STEP-YA to improve insomnia symptoms and mood in YACS and assess the utility of individualized coaching to improve treatment effects. A secondary aim will explore participant variables associated with clinically significant response to STEP-YA. This 2-arm randomized prospective trial will enroll 74 off-treatment YACS aged 20 years to 39 years with clinically significant insomnia. Each participant completes the STEP-YA intervention in a 1-on-1 synchronous online session led by a trained interventionist following a structured outline. The 90-minute intervention presents educational information on the development of insomnia after cancer and offers specific suggestions for improving insomnia symptoms. During the session, participants review the suggestions and develop a personalized sleep action plan for implementing them. After the session, participants are randomized to either the coaching condition, in which they receive 2 telephone coaching sessions, or the no-coaching condition, which offers no subsequent coaching. The Insomnia Severity Index (ISI) and the Profile of Mood States: Short Form (POMS-SF) are assessed at baseline and 4 and 8 weeks postintervention. Enrollment began in November 2022, with 28 participants currently enrolled. We anticipate recruitment will be completed in 2024. The primary endpoint is a change in ISI score from baseline to 8 weeks postintervention. The secondary endpoint is change in mood symptoms (POMS-SF) from baseline to 8 weeks postintervention. Change scores will be treated as continuous variables. Primary analyses will use ANOVA methods. A within-subjects analysis will examine if the STEP-YA intervention is associated with significant changes in insomnia and mood over time. A 2-way ANOVA will be used to evaluate the utility of coaching sessions to improve treatment effects. Chronic insomnia has significant negative effects on YACS' medical, educational, and psychological functioning. STEP-YA aims to address their needs; study results will determine if the intervention warrants future effectiveness and dissemination studies and if individualized coaching is necessary for adequate treatment response. ClinicalTrials.gov NCT05358951: https://clinicaltrials.gov/study/NCT05358951. DERR1-10.2196/52315.

Reel Resilience: Unveiling the Potential Role of Entertainment Media Narratives in Improving Psychological Well-Being Among Adolescent and Young Adult Cancer Survivors.

Reel Resilience: Unveiling the Potential Role of Entertainment Media Narratives in Improving Psychological Well-Being Among Adolescent and Young Adult Cancer Survivors.

Sexual Health in Young Adult Patients after Chimeric Antigen Receptor T-Cell Therapy

Background: Chimeric antigen receptor T-cell therapy (CAR T) has shown significant promise for treating relapsed/refractory hematologic malignancies. Although there is growing literature on immune mediated toxicities, studies examining late effects and survivorship concerns are limited. Sexual health is an important survivorship issue with implications for overall health-related quality of life (HRQOL) and is particularly relevant for young adults (YAs) aged 18-39 years. For YAs, cancer co-occurs with a critical period of physical and psychosocial development during which romantic relationships are formed and physical, psychosocial, and sexual milestones are achieved. No studies have evaluated sexual health among YAs treated with CAR T. To address this knowledge gap, we conducted a mixed methods study to examine sexual health and HRQOL after CAR T among YAs and explore communication about sexual health between YA CAR T recipients and their healthcare providers. Methods: This was a cross-sectional, single center study conducted at Moffitt Cancer Center. Participants were adults aged 18-39 years treated with CAR T. Participants were asked to complete a one-time survey and an individual semi-structured interview. The survey included short form measures from the Patient-Reported Outcomes Measurement Information System (PROMIS) assessing sexual health (desire/interest in sexual activity, sexual function, sexual satisfaction) and HRQOL (depression, anxiety, fatigue, sleep disturbance, pain interference, global pain, physical function, social function, cognitive function, emotional impact). PROMIS scores were calculated as T-scores with a normative M=50, SD=10, and a minimally important difference (MID) of 5 points. The survey also included study-specific items assessing patient-provider communication about sexual health. For qualitative data collection, a semi-structured interview guide was used to assess the impact of cancer and CAR T on participants' sexual health and HRQOL, as well as patients' experiences with communicating about sexual health with providers, partners, and their broader support system during and after treatment. Preliminary analysis included descriptive statistics for quantitative data in relation to evidence-based thresholds, and a preliminary thematic analysis of qualitative data. Results: In total, n=13 YA CAR T recipients completed the study survey, and n=10 agreed to participate in individual semi-structured interviews. Participant characteristics are depicted in Table 1. Median age of participants was 35 years (range: 21-39), 61.5% identified as male, and the majority (92.3%) identified as heterosexual. Median time since CAR T infusion was 30 months (range: 1-50). Quantitative data overall and by biological sex are summarized in Table 2. Average interest in sexual activity was low among females (M=35.1, SD=10.0) but not males (M=48.7, SD=10.3). All other average scores were within normal ranges. Several differences in average scores between males and females exceeded the 5-point MID, with female participants reporting less interest in sexual activity, worse fatigue, more impaired social function, and worse emotional impact. Most YAs had not discussed (46.2%) or did not remember discussing (38.5%) sexual health with a healthcare provider before CAR T. Most (76.9%) had not discussed sexual health with a healthcare provider since receiving CAR T. Three major themes emerged from the qualitative data: 1) YAs perceive a lack of awareness of YA sexual health priorities among their healthcare team, 2) There is a lack of communication and information about potential sexual health side effects after CAR T, and 3) Parents as caregivers are a barrier to YAs communicating with their healthcare team about sexual health. Conclusion: This was the first study to explore sexual health outcomes among YA cancer survivors treated with CAR T. Findings highlight a need for improved patient-provider communication regarding sexual health and more publicly available educational resources. Providers may prioritize one-on-one discussions with patients and limit parent involvement when discussing sexual health needs. As the population of CAR T survivors continues to grow, it is imperative to examine patient reported outcomes and late effects to improve survivorship outcomes. Author Note: AB &amp; VIG share first authorship. LO &amp; RF share senior authorship.