Exercise and QUality diet After Leukemia (EQUAL): A randomized weight loss trial among adult survivors of childhood leukemia in the Childhood Cancer Survivor Study.

BACKGROUND: Obesity is prevalent in childhood cancer survivors and interacts with cancer treatments to potentiate risk for cardiovascular (CV) death. We tested a remote weight-loss intervention that was effective among adults with CV risk factors in a cohort of adult survivors of childhood acute lymphoblastic leukemia (ALL) with overweight/obesity. METHODS: In this phase 3 efficacy trial, survivors of ALL enrolled in the Childhood Cancer Survivor Study with body mass index (BMI)≥25 kg/m2 were randomized to a remotely-delivered weight-loss intervention versus self-directed weight loss, stratified by history of cranial radiotherapy (CRT). The primary endpoint was the difference in weight loss at 24-months in an intent-to-treat analysis. Analyses were performed using linear mixed effects models. RESULTS: Among 358 survivors (59% female, median attained age: 37 years, IQR: 33-43), baseline mean (SD) weight was 98.6 kg (24.0) for the intervention group (n=181) and 94.9 kg (20.3) for controls (n=177). Adherence to the intervention was poor; 15% of individuals in the intervention completed 24/30 planned coaching calls. Weight at 24-months was available for 274 (77%) participants. After controlling for CRT, sex, race/ethnicity, and age, the mean (SE) change in weight from baseline to 24-months was -0.4 kg (0.8) for intervention and 0.2 kg (0.6) for control participants (p=0.59). CONCLUSIONS: A remote weight-loss intervention that was successful among adults with CV conditions did not result in significant weight loss among adult survivors of childhood ALL. IMPACT: Future interventions in this population must be tailored to the unique needs of survivors to encourage engagement and adherence.

Preliminary testing of "roadmap to parenthood" decision aid and planning tool for family building after cancer: Results of a single-arm pilot study.

OBJECTIVE: Many young adult female cancer survivors need to use reproductive medicine, surrogacy, or adoption to have a child. This study pilot tested Roadmap to Parenthood, a web-based, self-guided decision aid and planning tool for family building after cancer (disease agnostic). METHODS: A single-arm pilot study tested feasibility, acceptability, and obtained effect size estimates of the Roadmap tool. Participants, recruited via hospital-based and social media strategies, completed a baseline survey (T1), accessed the Roadmap tool (website), then completed surveys at one- and 3-months (T2 and T3, respectively). Feasibility and acceptability were evaluated with rates of eligibility, enrollment, and survey completion, and feedback. Pairwise t-tests and repeated measures ANOVA evaluated usage effects. Effect size estimates were calculated. RESULTS: Participants (N = 98) averaged 31 years old (SD = 5.61); 71% were nulliparous. Enrollment rate was 73%, T1-T2 completion rate was 80%, and 93% accessed the website. From T1-T2, participants reported improvements in decisional conflict (p < 0.001; Cohen's d = 0.85), unmet information needs (p < 0.001; Cohen's d = 0.70), self-efficacy (p = 0.003; Cohen's d = 0.40), and self-efficacy for managing negative emotions (p = 0.03; Cohen's d = 0.29); effects were sustained at T3. There was no change in reproductive distress (p = 0.22). By T3, 94% reported increased consideration of preparatory actions and 20%-61% completed such actions. CONCLUSIONS: The Roadmap intervention was feasible to conduct, acceptable to users, and led to improvements in key psychosocial outcomes. Future directions will test intervention efficacy in a randomized controlled trial with a larger sample and over a longer period. A web-based tool may help women make decisions about family building after cancer and prepare for potential challenges.

Perceptions of Infertility and Reproductive Concerns in Adolescent and Young Adult Female Cancer Survivors.

This cross-sectional survey study explores the fertility perceptions of adolescent and young adult female cancer survivors (n = 111) and relationships to fertility counseling and reproductive distress. Satisfaction with post-treatment fertility counseling (ß = -0.20, p = 0.04), perceived consequences of cancer-related fertility changes (ß = 0.26, p = 0.03), and understanding of one's reproductive health (ß = -0.22, p = 0.03) correlated with reproductive distress, controlling for covariates (F(10, 88) = 3.50, p < 0.001). Findings suggest that post-treatment counseling may be important to addressing survivors' perceptions of fertility and reproductive potential, which influences levels of distress and to create a greater sense of control on their road to parenthood.

"What if I die and no one had ever romantically loved me?": sexual well-being in a sample of YA cancer survivors.

PURPOSE: Among young adult (YA) cancer survivors, sexual health is often exclusively focused on sexual functioning, or the completion of sexual tasks. However, it has become clear that there is another element of sexual health, sexual well-being-one's subjective experience of sex (e.g., body image or sexual/romantic relationship satisfaction)-that may be just as impaired as sexual functioning. In this study, we sought to elucidate potential themes that YA cancer survivors experience that cross both sexual functioning and well-being, thus encouraging more comprehensive sexual health education among those diagnosed with cancer. METHODS: Semi-structured interviews were conducted as part of a larger qualitative study. Three codes developed by a team of coders-Social Isolation: Dating and Sex, Self-Evaluative Emotion: Shame in Dating and Relationships, and Self-Evaluative Emotion: Shame in Body Image/Physical Ability Concerns-included both sexual functioning and sexual well-being, and therefore guided this analysis. RESULTS: Our sample consisted of thirty-five YA cancer survivors who were predominately female (86%) and non-Latino White (77%). Four themes emerged: missing out/aging out, inability to please (potential) partners, body image concerns, and unmet needs for social support. CONCLUSION: While current research has identified sexual functioning as making up most of the sexual health education that cancer survivors receive, there is an interrelationship between sexual functioning and sexual well-being. IMPLICATIONS FOR CANCER SURVIVORS: The clinical ramifications of the data are clear: more work must be done to address sexuality within both the couple and the individual survivor, and that work cannot be exclusively devoted to sexual functioning.

Greater fertility distress and avoidance relate to poorer decision making about family building after cancer among adolescent and young adult female survivors.

BACKGROUND: Many adolescent and young adult female (AYA-F) cancer survivors face decisions about family building using reproductive medicine or adoption to achieve parenthood. This study evaluated associations among reproductive distress, avoidance, and family-building decision making and identified sociodemographic and clinical characteristics related to high distress and avoidance. METHODS: A cross-sectional survey assessed AYA-F survivors' oncofertility experiences. Measures included an investigator-designed Unmet Information Needs scale, Reproductive Concerns After Cancer Scale, Impact of Events Scale-Avoidance subscale, Decision Self-Efficacy scale, and Decision Conflict Scale. Two linear regression models evaluated correlates of decision self-efficacy and decisional conflict about family building after cancer. Bivariate analyses evaluated correlates of avoidance using Pearson's correlation, t-test, and ANOVA. RESULTS: AYA-Fs (N = 111) averaged 31-years-old (SD = 5.49) and 3 years post-treatment (range: 1-23 years); 90% were nulliparous. Most common diagnoses were leukemia (24%) and breast cancer (22%). Average decisional conflict was 52.12 (SD = 23.87, range: 0-100); 74% of the sample reported DCS scores within the clinically significant range. Higher levels of reproductive distress (B = -0.23, p = 0.04) and avoidance (B = -0.24, p = 0.02) related to lower decision self-efficacy. Younger age (B = -0.18, p = 0.03), greater unmet information needs (B = 0.33, p < 0.001), and higher levels of reproductive distress (B = 0.34, p = 0.001) related to worse decisional conflict. Predictors of distress and avoidance were identified. CONCLUSIONS: After cancer treatment, high fertility distress and avoidant coping were associated with poorer quality decision making about family building after cancer. Fertility counseling post-treatment should support self-efficacy and constructive coping skills to counteract high distress, maladaptive coping, and facilitate values-based decision making.

Cancer-Peer Connection in the Context of Adolescent and Young Adult Cancer: A Qualitative Exploration.

Purpose: This qualitative study examined experiences and attitudes related to cancer-peer interactions among adolescent and young adult (AYA) cancer survivors. Methods: Twenty-six survivors, aged 16-24 years who were diagnosed with cancer between the ages of 14 and 18, completed one-on-one semistructured interviews as part of a larger study. Interviews were coded and analyzed using an iterative consensus and data-driven approach. Results: The data for this study revealed three main themes related to cancer peers, including the unique aspects of shared illness experience (i.e., personalizing of support from lived experience, inspiration from upward comparisons, space to be scared and to joke about cancer), benefits of providing support to other patients/survivors (i.e., giving back, healing after cancer, and incorporating cancer into life as a survivor), and considerations and concerns when connecting with cancer peers (i.e., exposure to adverse outcomes, "ignorance is bliss": blocking cancer out, guilt and cancer imposter syndrome). Conclusion: Study findings demonstrate the importance of cancer-peer connection and support in AYA cancer care, both during treatment and in survivorship. Future research should explore the ways in which peer-to-peer support programs could be tailored to best serve the AYA population in the context of cancer care.

The Impact of Cancer-Related Financial Toxicity on Reproductive Concerns and Family-Building Decision-Making in Post-Treatment Survivorship.

Purpose: Adolescent and young adult (AYA) survivors are at-risk for cancer-related financial difficulties (i.e., financial toxicity [FT]). Family building after cancer often requires reproductive medicine or adoption with high costs; AYAs experience financial barriers to family building. This study evaluated the relationships among cancer FT, reproductive concerns, and decision-making processes about family building after cancer. Methods: AYA female (AYA-F) cancer survivors completed a cross-sectional survey including measures of FT, reproductive concerns, decisional conflict about family building, and decision-making self-efficacy. Differences across FT subgroups (i.e., no/mild, moderate, and severe FT) were tested. Linear regression evaluated the relationships between FT and reproductive concerns and decision-making processes. Results: Participants (N = 111) averaged 31.0 years (standard deviation [SD] = 5.49), 90% were nulliparous, and 84% were employed full/part-time. The overall FT levels were in the "moderate" range (M = 20.44, SD = 9.83); 48% worried quite a bit or very much about financial problems because of cancer. AYA-Fs reporting severe FT (24% of sample) experienced higher levels of reproductive concerns compared with those reporting no/mild and moderate FT. Those reporting moderate FT (46% of sample) reported greater decisional conflict about family-building options, compared with the no/mild FT subgroup. Both moderate and severe FT subgroups reported lower decision-making self-efficacy compared with the no/mild FT subgroup. In separate models controlling for covariates, greater FT related to higher levels of reproductive concerns (B = -0.39, p < 0.001), greater decisional conflict about family building (B = -0.56, p = 0.02), and lower decision-making self-efficacy (B = 0.60, p = 0.01). Conclusions: Given the high costs of reproductive medicine and adoption, fertility counseling pre- and post-treatment must address survivors' financial concerns and barriers.

Implementing a mHealth intervention to increase colorectal cancer screening among high-risk cancer survivors treated with radiotherapy in the Childhood Cancer Survivor Study (CCSS).

BACKGROUND: Cancer survivors treated with any dose of radiation to the abdomen, pelvis, spine, or total body irradiation (TBI) are at increased risk for developing colorectal cancer (CRC) compared to the general population. Since earlier detection of CRC is strongly associated with improved survival, the Children's Oncology Group (COG) Long-Term Follow-Up Guidelines recommend that these high-risk cancer survivors begin CRC screening via a colonoscopy or a multitarget stool DNA test at the age of 30 years or 5 years following the radiation treatment (whichever occurs last). However, only 37% (95% CI 34.1-39.9%) of high-risk survivors adhere to CRC surveillance. The Activating cancer Survivors and their Primary care providers (PCP) to Increase colorectal cancer Screening (ASPIRES) study is designed to assess the efficacy of an intervention to increase the rate of CRC screening among high-risk cancer survivors through interactive, educational text-messages and resources provided to participants, and CRC screening resources provided to their PCPs. METHODS: ASPIRES is a three-arm, hybrid type II effectiveness and implementation study designed to simultaneously evaluate the efficacy of an intervention and assess the implementation process among participants in the Childhood Cancer Survivor Study (CCSS), a North American longitudinal cohort of childhood cancer survivors. The Control (C) arm participants receive electronic resources, participants in Treatment arm 1 receive electronic resources as well as interactive text messages, and participants in Treatment arm 2 receive electronic educational resources, interactive text messages, and their PCP's receive faxed materials. We describe our plan to collect quantitative (questionnaires, medical records, study logs, CCSS data) and qualitative (semi-structured interviews) intervention outcome data as well as quantitative (questionnaires) and qualitative (interviews) data on the implementation process. DISCUSSION: There is a critical need to increase the rate of CRC screening among high-risk cancer survivors. This hybrid effectiveness-implementation study will evaluate the effectiveness and implementation of an mHealth intervention consisting of interactive text-messages, electronic tools, and primary care provider resources. Findings from this research will advance CRC prevention efforts by enhancing understanding of the effectiveness of an mHealth intervention and highlighting factors that determine the successful implementation of this intervention within the high-risk cancer survivor population. TRIAL REGISTRATION: This protocol was registered at clinicaltrials.gov (identifier NCT05084833 ) on October 20, 2021.

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing.

BACKGROUND: Owing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer. OBJECTIVE: As part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience. METHODS: In total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement. RESULTS: Participants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from "acceptable" in round 1 to "excellent" in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges. CONCLUSIONS: Website usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

"Empathy without sympathy": An analysis of support-related preferences among young adult cancer survivors.

OBJECTIVES: Young adult cancer survivors often experience altered social relationships which may be a result of social support networks not knowing how to effectively provide the support young adults need. This study aimed to identify and describe themes of young adults' support preferences when engaging in cancer-related conversations and examine whether psychological distress is associated with support-related preferences. METHODS: Young adult survivors (Mage=35.12, N = 59) completed validated self-report measures of depression, cancer-related stress, social isolation, and two open-ended questions on types of preferred support. RESULTS: Listening (81.4%) was most commonly preferred; showing pity/worry (33.9%) was most undesired. Other types of preferred support included empathy, validation, encouragement (42.4%), and honest conversation (23.7%); common types of undesirable support included being uninterested and changing the subject (32.3%), insensitive comments and questions (25.4%), and negative stories/personal comparisons (23.7%). Greater depressive symptoms (OR = 1.21, p = .05) were associated with a preference for honest conversations whereas lower depressive symptoms (OR = 0.83, p = 0.05) and greater cancer-related stress (OR = 1.07, p = .02) were associated with a preference for conversations that did not contain advice. Lastly, lower perceived social isolation (OR = 0.88, p = .05) was associated with a preference for conversations that were not minimizing and that did not contain expressions of pity/worry. CONCLUSIONS: Study findings can inform communication interventions and educate support networks about types of support young adults prefer when discussing cancer-related concerns.

General cancer screening practices among adult survivors of retinoblastoma: Results from the Retinoblastoma Survivor Study.

We assessed breast, cervical, and colorectal cancer screening practices in adult retinoblastoma (Rb) survivors and non-Rb controls. We found that most Rb survivors adhered to general population cancer screening recommendations. Rates did not differ among Rb survivors and non-Rb controls, or among survivors by laterality, even though bilateral survivors reported higher levels of concern about future health and cancer risk. Older age, being overweight/obese, and lack of recent contact with medical personnel were independently associated with decreased utilization of Pap smear among female Rb survivors. Future studies are warranted to determine whether these associations might provide an opportunity for intervention.

A Decision Aid Intervention for Family Building After Cancer: Developmental Study on the Initial Steps to Consider When Designing a Web-Based Prototype.

BACKGROUND: An important aspect of patient-centered care involves ensuring that patient-directed resources are usable, understandable, and responsive to patients' needs. A user-centered design refers to an empathy-based framework and an iterative design approach for developing a product or solution that is based on an in-depth understanding of users' needs, values, abilities, and limitations. OBJECTIVE: This study presents the steps taken to develop a prototype for a patient resource for young women who have completed treatment for gonadotoxic cancer to support their decision making about follow-up fertility care and family building. METHODS: User-centered design practices were used to develop Roadmap to Parenthood, a decision aid (DA) website for family building after cancer. A multidisciplinary steering group was assembled and input was provided. Guidelines from the International Patient DA Society and the Ottawa Decision Support Framework were used throughout the development process. In addition, guidelines for developing health DAs with respect to patient diversity and health literacy were also followed. RESULTS: The Roadmap to Parenthood DA website prototype was systematically and iteratively developed. An extensive process of designing and developing solutions from the perspective of the end user was followed. The steps taken included formative work to identify user needs; determining goals, format, and delivery; design processes (eg, personas, storyboards, information architecture, user journey mapping, and wireframing); and content development. Additional design considerations addressed the unique needs of this patient population, including the emotional experiences related to this topic and decision-making context wherein decisions could be considered iteratively while involving a multistep process. CONCLUSIONS: The design strategies presented in this study describe important steps in the early phases of developing a user-centered resource, which will enhance the starting point for usability testing and further design modifications. Future research will pilot test the DA and a planning tool, and evaluate improvement in the decisional conflict regarding family building after cancer. Consistent with a patient-centered approach to health care, the strategies described here may be generalized and applied to the development of other patient resources and clinical contexts to optimize usability, empathy, and user engagement.

Associations Among Perceived Parent and Peer Support, Self-Esteem, and Cancer-Related Worry in Adolescent and Young Adult Cancer Survivors.

Purpose: Cancer-related worry is common among adolescent and young adult (AYA) cancer survivors, and is associated with adverse psychosocial outcomes. Thus, it is crucial to identify possible modifiable covariates of cancer-related worry to aid in developing targeted interventions. This study aimed to explore the cross-sectional associations between cancer-related worry and potential covariates (i.e., perceived parental support, perceived peer support, self-esteem). Methods: One hundred fifty-two survivors between the ages of 15 and 25 who had been diagnosed with cancer between the ages of 14 and 21 completed the Inventory of Parent and Peer Attachment, the Rosenberg Self-Esteem Scale, the Self-Perception Profile for Adolescents, and a measure of cancer-related worry. Relationships among variables were assessed through structural equation modeling. Results: The model showed good fit [χ2(13) = 13.26, p = 0.43; comparative fit index = 0.997; root mean square error of approximation = 0.01 (90% confidence interval = 0.00-0.08); standardized root mean square residual = 0.04]; however, not all associations were in expected directions. Higher perceived parent and peer support were each significantly associated with lower self-esteem, which, in turn, was significantly associated with higher cancer-related worry. There was no direct association between support variables and cancer-related worry. Conclusion: These findings, which contradict existing theory about self-esteem development in healthy AYAs and prior research about the association between support and self-esteem in children and adolescents with cancer, suggest complex, and likely reciprocal, relationships among perceived support, cancer-related worry, and self-esteem in AYA cancer survivors. Support interventions involving peers with cancer and cognitive behavioral interventions targeting parent and peer relationships, self-esteem, and cancer-related worry may be beneficial in fostering AYA cancer survivors' psychosocial development.

Covariates of risky health behaviors in pediatric cancer survivors during adolescence.

PURPOSE: Adolescent survivors of pediatric cancers may use alcohol and tobacco (73-90% and 10-29%, respectively) at similar rates as their healthy peers despite known adverse health effects of these substances. This is concerning given that these behaviors can increase the risk for adverse late effects among this population. This study explores the beliefs and behaviors associated with alcohol and tobacco use among adolescent survivors of pediatric cancer. DESIGN: Cross-sectional study using assessment questionnaires by telephone. PARTICIPANTS: Adolescent cancer survivors who had been seen at Memorial Sloan Kettering Cancer Center (n = 128). METHODS: Questionnaires concerned participants' medical history, current health behaviors, attitudes about health behaviors, fear of cancer recurrence, cancer worry, knowledge of risk, and perceived risk of future health problems. Univariate and multiple logistic regression analyses determined the association between psychological covariates with having ever used alcohol and cigarettes. RESULTS: In multiple logistic regression, higher positive attitude (OR = 3.65; p < 0.001) toward alcohol use and lower knowledge of the risk of binge drinking (OR = 0.38; p < 0.05) were significantly related to alcohol use. Older age (OR = 1.55; p < 0.01), lower knowledge of the risks of smoking (0.41; p < 0.05), and the subjective norm that smoking is desirable to others (OR = 1.90; p < 0.05) were significantly related to cigarette use. CONCLUSION AND IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: Understanding the uptake of risky health behaviors and factors related to tobacco and alcohol use for adolescent survivors is imperative to promoting lifelong healthy behaviors and potentially reducing future adverse health effects. Despite broadly disseminated public service campaigns and anticipatory guidance of our cancer specialists to inform youth about the adverse effects of alcohol and tobacco use, there remains a gap in adolescent cancer survivors' knowledge of these risks. More effective interventions to increase knowledge of the risks of drinking and smoking are needed to bridge this gap.

"Looking at future cancer survivors, give them a roadmap": addressing fertility and family-building topics in post-treatment cancer survivorship care.

PURPOSE: Fertility is an important issue among adolescent and young adult female (AYA-F) cancer survivors. This study examined AYA-F survivors' unmet needs and recommendations for care to address fertility/family-building in post-treatment survivorship. METHODS: Semi-structured interviews (45-60 min) explored themes related to fertility and family-building after cancer. Coding categories were derived based on grounded theory methods. Themes were identified through an iterative process of coding and review. RESULTS: Participants (N = 25) averaged 29 years old (SD = 6.2; range, 15-39) were primarily White and well educated, and averaged 5.81 years post-treatment (SD = 5.43); 32% had undergone fertility preservation (pre- or post-cancer). Six recommendations for improving care were identified: addressing patient-provider communication, need to provide informational, emotional, and peer support, financial information, and decision-making support. AYA-Fs believed the best way to learn about resources was through online platforms or doctor-initiated discussions. Telehealth options and digital resources were generally considered acceptable. Face-to-face interactions were preferred for in-depth information, when AYA-Fs anticipated having immediate questions or distressing emotions, and with concerns about Internet security. Thus, a combined approach was preferred such that information (via web-based communication) should be provided first, with follow-up in-person visits and referrals when needed. CONCLUSION: Informational and support services are needed to better educate patients about gonadotoxic effects and options to have children after cancer treatment is completed. Future work should evaluate how to best support oncology providers in meeting the needs of survivors concerned about fertility and family-building including referral to clinical specialties and supportive resources.

"Basically, You Had Cancer and Now You Don't": Exploring the Meaning of Being a "Cancer Survivor" Among Adolescents and Young Adult Cancer Survivors.

Purpose: Survivorship experiences among adolescent and young adults (AYA) with cancer are unique and may involve a process of identity construction. This qualitative study explored AYA survivors' felt experience of being a cancer survivor focusing on the meaning of survivorship and whether identifying as a "cancer survivor" is consistent with their self-concept. Methods: Twenty-six individual semistructured interviews were conducted with AYA (M = 19.6 years; range: 16-24) with a history of cancer diagnosed between the ages of 14 and 18 (M = 15.6 years). Relevant themes in the literature and through clinical practice guided the development and use of the semistructured interview guides. Results: Thematic content analysis was used to identify cancer-related identities. Three identities emerged: Embracing: acceptance and identification with being a "cancer survivor," cancer is a significant part of their life, Part of the Past: identifies as a "cancer survivor," but does not let cancer define their life or see cancer as a nonissue, and Not Part of my Identity: does not identify with the term "cancer survivor," cancer seemed like a small event. Conclusion: AYA construct different meanings to the words "cancer survivor." These different meanings might reflect a process of identity construction, for some, the characteristics of cancer seemed integrated into one's self-concept, for others, the thought of being a "cancer survivor" rarely entered how they defined themselves. These findings shed light into how AYA reconcile integrating a cancer experience into their self-concept and emphasize the importance of not one-size-fits-all approach to understanding AYA internalization of being a cancer survivor.

Adherence to Surveillance for Second Malignant Neoplasms and Cardiac Dysfunction in Childhood Cancer Survivors: A Childhood Cancer Survivor Study.

PURPOSE: To evaluate childhood cancer survivors' adherence to surveillance protocols for late effects of treatment and to determine the factors affecting adherence. METHODS: Between 2014 and 2016, 11,337 survivors and 2,146 siblings in the Childhood Cancer Survivor Study completed a survey ascertaining adherence to Children's Oncology Group (COG) guidelines for survivors at high risk for second malignant neoplasms or cardiac dysfunction and to the American Cancer Society (ACS) cancer screening guidelines for average-risk populations. Adherence rates and factors affecting adherence were analyzed. RESULTS: Median age at diagnosis was 7 years (range, 0-20.9 years), and median time from diagnosis was 29 years (range, 15-47 years). Among high-risk survivors, adherence to COG breast, colorectal, skin, and cardiac surveillance was 12.6% (95% CI, 10.0% to 15.3%), 37.0% (34.1% to 39.9%), 22.3% (21.2% to 23.4%), and 41.4% (40.1% to 42.7%), respectively. Among average-risk survivors, adherence to ACS breast, cervical, and colorectal screening was 57.1% (53.2% to 61.0%), 83.6% (82.7% to 84.5%), and 68.5% (64.7% to 72.2%), respectively. Twenty-seven percent of survivors and 20.0% of primary care providers (PCPs) had a survivorship care plan (SCP). For high-risk survivors, SCP possession was associated with increased adherence to COG breast (22.3% v. 8.1%; prevalence ratio [PR], 2.52; CI, 1.59 to 4.01), skin (34.8% v 23.0%; PR, 1.16; CI, 1.01 to 1.33), and cardiac (67.0% v 33.1%; PR, 1.73; CI, 1.55 to 1.92) surveillance. For high-risk survivors, PCP possession of a SCP was associated only with increased adherence to COG skin cancer surveillance (36.9% v 23.2%; PR, 1.24; CI, 1.08 to 1.43). CONCLUSION: Guideline adherence is suboptimal. Although survivor SCP possession is associated with better adherence, few survivors and PCPs have one. New strategies to improve adherence are needed.

Late mortality and chronic health conditions in long-term survivors of early-adolescent and young adult cancers: a retrospective cohort analysis from the Childhood Cancer Survivor Study.

BACKGROUND: Treatment outcomes among survivors of cancer diagnosed during adolescence and early young adulthood have not been characterised independently of survivors of cancers diagnosed during childhood. We aimed to describe chronic health conditions and all-cause and cause-specific mortality among survivors of early-adolescent and young adult cancer. METHODS: The Childhood Cancer Survivor Study (CCSS) is a retrospective cohort study with longitudinal follow-up of 5-year survivors diagnosed with cancer before the age of 21 years at 27 academic institutions in the USA and Canada between 1970 and 1999. We evaluated outcomes among survivors of early-adolescent and young adult cancer (aged 15-20 years at diagnosis) and survivors diagnosed at age younger than 15 years (matched on primary cancer diagnosis, including leukaemia, lymphoma, CNS tumours, neuroblastoma, Wilms tumour, soft-tissue sarcomas, and bone cancer) by comparing both groups to siblings of the same age. Mortality was ascertained with the National Death Index. Chronic health conditions were classified with the Common Terminology Criteria for Adverse Events. Standardised mortality ratios (SMRs) were estimated with age-specific, sex-specific, and calendar year-specific US rates. Cox proportional hazard models estimated hazard ratios (HRs) for chronic health conditions and 95% CIs. FINDINGS: Among 5804 early-adolescent and young adult survivors (median age 42 years, IQR 34-50) the SMR compared to the general population for all-cause mortality was 5·9 (95% CI 5·5-6·2) and among 5804 childhood cancer survivors (median age 34 years; 27-42), it was 6·2 (5·8-6·6). Early-adolescent and young adult survivors had lower SMRs for death from health-related causes (ie, conditions that exclude recurrence or progression of the primary cancer and external causes, but include the late effects of cancer therapy) than did childhood cancer survivors (SMR 4·8 [95% CI 4·4-5·1] vs 6·8 [6·2-7·4]), which was primarily evident more than 20 years after cancer diagnosis. Early-adolescent and young adult cancer survivors and childhood cancer survivors were both at greater risk of developing severe and disabling, life-threatening, or fatal (grade 3-5) health conditions than siblings of the same age (HR 4·2 [95% CI 3·7-4·8] for early adolescent and young adult cancer survivors and 5·6 [4·9-6·3] for childhood cancer survivors), and at increased risk of developing grade 3-5 cardiac (4·3 [3·5-5·4] and 5·6 [4·5-7·1]), endocrine (3·9 [2·9-5·1] and 6·4 [5·1-8·0]), and musculoskeletal conditions (6·5 [3·9-11·1] and 8·0 [4·6-14·0]) when compared with siblings of the same age, although all these risks were lower for early-adolescent and young adult survivors than for childhood cancer survivors. INTERPRETATION: Early-adolescent and young adult cancer survivors had higher risks of mortality and severe and life threatening chronic health conditions than the general population. However, early-adolescent and young adult cancer survivors had lower non-recurrent, health-related SMRs and relative risks of developing grade 3-5 chronic health conditions than childhood cancer survivors, by comparison with siblings of the same age, which were most notable more than 20 years after their original cancer. These results highlight the need for long-term screening of both childhood and early-adolescent and young adult cancer survivors. FUNDING: National Cancer Institute and American Lebanese-Syrian Associated Charities.