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.

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.

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.

"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.

"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.

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.

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.

Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: Optimal risk-based survivor health care includes surveillance for late effects and education targeted at reducing or preventing risky health behaviors. Understanding the reasons for a lack of risk-based follow-up care is essential. METHODS: Adult participants from the Childhood Cancer Survivor Study were surveyed about having a cancer-related visit in the past 2 years and the likelihood of having a cancer-related visit in the future. Additional factors thought to be related to the primary outcomes were also assessed. RESULTS: Nine hundred seventy-five survivors completed the survey. Twenty-seven percent (95% confidence interval [CI], 24%-30%) had a cancer-related medical visit in the previous 2 years, and 41% (95% CI, 38%-44%) planned to have such a visit within the next 2 years. The likelihood of having had a cancer-related visit within the last 2 years was higher among survivors assigning greater importance to these visits (relative risk [RR], 1.2; 95% CI, 1.1-1.3), perceiving greater susceptibility to health problems (RR, 1.2; 95% CI, 1.1-1.3), having a moderate to life-threatening chronic health problem related to their cancer (RR, 2.1; 95% CI, 1.7-2.7), seeing a primary care provider for a cancer-related problem (RR, 1.3; 95% CI, 1.0-1.6), having a cancer treatment summary (RR, 1.3; 95% CI, 1.0-1.6), and endorsing greater confidence in physicians' abilities to address questions and concerns (RR, 1.2; 95% CI, 1.0-1.3). CONCLUSIONS: Educational interventions improving awareness of treatment history and susceptibility to cancer-related late effects and corresponding risk-based care are likely to be beneficial for survivors of childhood cancers.

Toward a theoretical understanding of young female cancer survivors' decision-making about family-building post-treatment.

PURPOSE: Family-building after gonadotoxic treatment often requires in vitro fertilization, surrogacy, or adoption, with associated challenges such as uncertain likelihood of success, high costs, and complicated laws regulating surrogacy and adoption. This study examined adolescent and young adult female (AYA-F) survivors' experiences and decision-making related to family-building after cancer. METHODS: Semi-structured interviews explored fertility and family-building themes (N = 25). Based on an a priori conceptual model, hypothesis coding and grounded theory coding methods guided qualitative analysis. RESULTS: Participants averaged 29 years old (SD = 6.2) were mostly White and educated. Four major themes were identified: sources of uncertainty, cognitive and emotional reactions, coping behaviors, and decision-making. Uncertainty stemmed from medical, personal, social, and financial factors, which led to cognitive, emotional, and behavioral reactions to reduce distress, renegotiate identity, adjust expectations, and consider "next steps" toward family-building goals. Most AYA-Fs were unaware of their fertility status, felt uninformed about family-building options, and worried about expected challenges. Despite feeling that "action" was needed, many were stalled in decision-making to evaluate fertility or address information needs; postponement and avoidance were common. Younger AYA-Fs tended to be less concerned. CONCLUSION: AYA-Fs reported considerable uncertainty, distress, and unmet needs surrounding family-building decisions post-treatment. Support services are needed to better educate patients and provide opportunity for referral and early preparation for potential challenges. Reproductive counseling should occur throughout survivorship care to address medical, psychosocial, and financial difficulties, allow time for informed decision-making, and the opportunity to prepare for barriers such as high costs.

Impact of enucleation on adult retinoblastoma survivors' quality of life: A qualitative study of survivors' perspectives.

OBJECTIVES: Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life. METHODS: Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form. RESULTS: Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living. SIGNIFICANCE OF RESULTS: This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.

Impact of exercise on psychological burden in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: Childhood cancer survivors are at risk for adverse psychological outcomes. Whether exercise can attenuate this risk is unknown. METHODS: In total, 6199 participants in the Childhood Cancer Survivor Study (median age, 34.3 years [range, 22.0-54.0 years]; median age at diagnosis, 10.0 years [range, 0-21.0 years]) completed a questionnaire assessing vigorous exercise and medical/psychological conditions. Outcomes were evaluated a median of 7.8 years (range, 0.1-10.0 years) later and were defined as: symptom level above the 90th percentile of population norms for depression, anxiety, or somatization on the Brief Symptom Inventory-18; cancer-related pain; cognitive impairment using a validated self-report neurocognitive questionnaire; or poor health-related quality of life. Log-binomial regression estimated associations between exercise (metabolic equivalent [MET]-hours per week-1 ) and outcomes adjusting for cancer diagnosis, treatment, demographics, and baseline conditions. RESULTS: The prevalence of depression at follow-up was 11.4% (95% CI, 10.6%-12.3%), anxiety 7.4% (95% CI, 6.7%-8.2%) and somatization 13.9% (95% CI, 13.0%-14.9%). Vigorous exercise was associated with lower prevalence of depression and somatization. The adjusted prevalence ratio for depression was 0.87 (95% CI, 0.72-1.05) for 3 to 6 MET hours per week-1 , 0.76 (95% CI, 0.62-0.94) for 9 to 12 MET-hours per week-1 , and 0.74 (95% CI, 0.58-0.95) for 15 to 21 MET-hours per week-1 . Compared with 0 MET hours per week-1 , 15 to 21 MET-hours per week-1 were associated with an adjusted prevalence ratio of 0.79 (95% CI, 0.62-1.00) for somatization. Vigorous exercise also was associated with less impairment in the physical functioning, general health and vitality (Ptrend  < .001), emotional role limitations (Ptrend  = .02), and mental health (Ptrend  = .02) domains as well as higher cognitive function in the domains of task completion, organization, and working memory (P < .05 for all), but not in the domain of cancer pain. CONCLUSIONS: Vigorous exercise is associated with less psychological burden and cognitive impairment in childhood cancer survivors.

Relational processes and psychological adjustment among young adults with cancer: The role of technology-related communication.

OBJECTIVE: Little attention has been paid to understanding how engaging in cancer-related interpersonal exchanges via varying modes of communication influences psychological well-being among young adults with cancer. This study explored the moderating role of communication mode on the relationship of relational processes of disclosure and responsiveness with psychological well-being. METHODS: 61 young adults with cancer (Mage = 34.59, SD = 4.82) completed a questionnaire about their most recent cancer-related conversation. Participants reported on communication mode (ie, face-to-face, text message, and phone call) and relational processes of self- and support member- disclosure of thoughts, information, and feelings and how accepted, cared for, and understood they felt within the cancer-related conversation. Cancer adjustment measures included functional well-being and depressive symptoms. RESULTS: There were no main effects of communication mode or relational processes. However, communication mode did moderate the relationship between relational processes and cancer adjustment. Greater relational processes of disclosure and responsiveness were associated with better functional well-being and lower depressive symptoms only among those who engaged in their most recent cancer-related conversation through technology-related communication and not for those engaged in face-to-face communication. CONCLUSION: Relational processes that are likely to benefit psychological adjustment after cancer appear to be particularly advantageous over technology-based communication. Young adults commonly report feelings of social isolation and psychological distress after cancer. These findings suggest that technology-related communication holds promise as a way to strengthen support-related communication and protect against distress.

Do Children with Special Health Care Needs with Anxiety have Unmet Health Care Needs? An Analysis of a National Survey.

OBJECTIVE: To describe differences in health care needs between Children with Special Health Care Needs (CSHCN) with and without anxiety and examine the association between anxiety and unmet health care needs. METHODS: We analyzed data from the 2009/2010 national survey of CSHCN. The independent variable was anxiety. The main outcomes were health care needs and unmet needs. Covariates included demographics, other co-morbid conditions, and the presence and quality of a medical home. We used bivariate analyses and multivariable logistic regression to assess the relationships among anxiety, covariates, and the outcomes. We stratified our analysis by age (6-11 years, 12-17 years). Propensity score matched paired analysis was used as a sensitivity analysis. RESULTS: Our final sample included 14,713 6-11 year-olds and 15,842 12-17-year-olds. Anxiety was present in 16% of 6-11 year-olds and 23% or 12-17 year-olds. In bivariate analyses, CSHCN with anxiety had increased health care needs and unmet needs, compared to CSHCN without anxiety. In multivariable analyses, only children 12-17 years old with anxiety had increased odds of having an unmet health care need compared to those children without anxiety (OR 1.44 [95% CI 1.17-1.78]). This was confirmed in the propensity score matching analysis (OR 1.12, [95% CI 1.02-1.22]). The specific unmet needs for older CSHCN with anxiety were mental health care (OR 1.54 [95% CI 1.09-2.17]) and well child checkups (OR 2.01 [95% CI 1.18-3.44]). CONCLUSION: Better integration of the care for mental and physical health is needed to ensure CSHCN with anxiety have all of their health care needs met.

Perceptions of risk of infertility among male survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: The objective of the current study was to characterize and identify factors associated with perceptions of risk of infertility among adult male survivors of childhood cancer. METHODS: A total of 1233 adult male survivors from the Childhood Cancer Survivor Study who were without a history of disease recurrence or subsequent malignancy reported their perceptions of their risk of infertility compared with men never diagnosed with cancer. Survivors were a median age of 37.8 years (range, 22.0-58.7 years) and were 28.4 years from their diagnosis (range, 21.4-39.2 years). Multivariable logistic regression evaluated factors associated with perceptions of risk. RESULTS: Overall, 35.9% of the survivors (443 of 1233 survivors) reported perceptions of their risk of infertility that were discordant with their actual risk based on previous cancer treatment exposures. Discordant perceptions were equally common among men exposed to gonadotoxic therapies (36.3%; 311 of 857 men) and those with no history of gonadotoxic exposure (35.1%; 132 of 376 men). Survivors who fathered children (odds ratio [OR], 4.14; 95% confidence interval [95% CI], 2.74-6.24), had no survivor-focused health care (OR, 3.07; 95% CI, 1.57-5.99), were nonwhite (OR, 2.28; 95% CI, 1.10-4.75), and were of lower income were more likely to report no increased risk of infertility after gonadotoxic treatment. Perceptions of increased risk of infertility among men with no history of gonadotoxic treatment were predicted by never having fathered a child (OR, 1.88; 95% CI, 1.17-3.03), recent participation in survivor-focused health care (OR, 2.11; 95% CI, 1.01-4.42), and higher educational achievement. CONCLUSIONS: Many male survivors of childhood cancer are unaware of how their cancer treatments could impact their reproductive health, underscoring the need for all patients to receive education regarding their risk of infertility throughout the continuum of cancer care. Cancer 2018;124:2447-55. © 2018 American Cancer Society.

The relationship between cancer-related worry and posttraumatic growth in adolescent and young adult cancer survivors.

OBJECTIVES: To examine cancer-related worry in adolescent and young adult (AYA) cancer survivors and its relationship with posttraumatic growth over time, as the relationship between these constructs has not been assessed longitudinally in this population. METHODS: A total of 153 AYA cancer survivors completed measures of cancer-related worry and posttraumatic growth 3 times across approximately 1 year. Descriptive statistics were calculated for cancer-related worry items, and mixed-effects modeling assessed the relationship between cancer-related worry and posttraumatic growth. RESULTS: Most participants reported at least moderate cancer-related worry in at least 1 area at each assessment (88.2-93.9% across time points). Worry about future health was the most prevalent concern (65.4%-83.7% across time points). Cancer-related worry was positively related to posttraumatic growth in the mixed-effects model. However, post hoc analyses indicated that cancer-related worry and posttraumatic growth were modestly related; there was no evidence that either construct predicted the other over time. CONCLUSIONS: Cancer-related worry appears to be a common psychosocial outcome in AYA cancer survivors. However, cancer-related worry appears to be only modestly related to the development of posttraumatic growth, implying that these may be independent constructs despite theoretical literature suggesting that posttraumatic growth may stem from posttraumatic distress. Thus, it is necessary to assess AYA survivors for cancer-related worry and posttraumatic growth, and develop interventions to target cancer-related worry and foster posttraumatic growth.

"Creating a family after battling cancer is exhausting and maddening": Exploring real-world experiences of young adult cancer survivors seeking financial assistance for family building after treatment.

OBJECTIVE: Young adult (YA) cancer survivors who received gonadotoxic therapy are at risk for impaired fertility and/or childbearing difficulties. This study explored the experiences and financial concerns of survivors pursuing family building through assisted reproductive technology (ART) and adoption. METHODS: Retrospective study of data collected from grant applications for financial assistance with family building. Grounded theory methodology using an inductive data-driven approach guided qualitative data analysis. RESULTS: Participants (N = 46) averaged 32 years old (SD = 3.4) were primarily female (81%) and married/partnered (83%). Four main themes were identified representing the (1) emotional experiences and (2) financial barriers to family building after cancer, (3) perceived impact on partners, and (4) disrupted life trajectory. Negative emotions were pervasive but were balanced with hope and optimism that parenthood would be achieved. Still, the combination of high ART/adoption costs, the financial impact of cancer, and limited sources for support caused extreme financial stress. Further, in the face of these high costs, many survivors reported worry and guilt about burdening partners, particularly as couples failed to meet personal and societal expectations for parenthood timelines. CONCLUSION: After cancer, YAs face numerous psychosocial and financial difficulties in their pursuits of family building when ART/adoption is needed to achieve parenthood. Survivors interested in future children may benefit from follow-up fertility counseling post-treatment including discussion of ART options, surrogacy, and adoption, as appropriate, and potential barriers. Planning for the financial cost and burden in particular may help to avoid or mitigate financial stress later on.

Prevalence and Correlates of Worry About Medical Imaging Radiation Among United States Cancer Survivors.

PURPOSE: Cancer survivors undergo lifelong surveillance regimens that involve repeated diagnostic medical imaging. As many of these diagnostic tests use ionizing radiation, which may modestly increase cancer risks, they may present a source of worry for survivors. The aims of this paper are to describe cancer survivors' level of worry about medical imaging radiation (MIR) and to identify patterns of MIR worry across subgroups defined by cancer type, other medical and demographic factors, and physician trust. METHOD: This cross-sectional study used the 2012-2013 Health Information National Trends Survey of US adults conducted by the National Cancer Institute. The analysis focused on the 452 respondents identifying as cancer survivors. Weighted logistic regression analysis was used to evaluate factors associated with higher MIR worry (reporting "some" or "a lot" of MIR worry). RESULTS: Nearly half (42%) of the sample reported higher worry about MIR. Unadjusted and adjusted logistic regressions indicated higher rates of MIR worry among those with lower incomes, those who self-reported poorer health, and those who completed cancer treatment within the past 10 years. Receipt of radiation treatment was associated with higher MIR worry in unadjusted analysis. CONCLUSION: Worries about MIR are relatively common among cancer survivors. An accurate assessment of the rates and patterns of worry could aid efforts to improve these individuals' survivorship care and education.

Effect of Temporal Changes in Therapeutic Exposure on Self-reported Health Status in Childhood Cancer Survivors.

BACKGROUND: The effect of temporal changes in cancer therapy on health status among childhood cancer survivors has not been evaluated. OBJECTIVE: To compare proportions of self-reported adverse health status outcomes among childhood cancer survivors across 3 decades. DESIGN: Cross-sectional. (ClinicalTrials.gov: NCT01120353). SETTING: 27 North American institutions. PARTICIPANTS: 14 566 adults, who survived for 5 or more years after initial diagnosis (median age, 27 years; range, 18 to 48 years), treated from 1970 to 1999. MEASUREMENTS: Patient report of poor general or mental health, functional impairment, activity limitation, or cancer-related anxiety or pain was evaluated as a function of treatment decade, cancer treatment exposure, chronic health conditions, demographic characteristics, and health habits. RESULTS: Despite reductions in late mortality and the proportions of survivors with severe, disabling, or life-threatening chronic health conditions (33.4% among those treated from 1970 to 1979 and 21.0% among those treated from 1990 to 1999), those reporting adverse health status did not decrease by treatment decade. Compared with survivors diagnosed in 1970 to 1979, those diagnosed in 1990 to 1999 were more likely to report poor general health (11.2% vs. 13.7%; P < 0.001) and cancer-related anxiety (13.3% vs. 15.0%; P < 0.001). From 1970 to 1979 and 1990 to 1999, the proportions of survivors reporting adverse outcomes were higher (P < 0.001) among those with leukemia (poor general health, 9.5% and 13.9%) and osteosarcoma (pain, 23.9% and 36.6%). Temporal changes in treatment exposures were not associated with changes in the proportions of survivors reporting adverse health status. Smoking, not meeting physical activity guidelines, and being either underweight or obese were associated with poor health status. LIMITATION: Considerable improvement in survival among children diagnosed with cancer in the 1990s compared with those diagnosed in the 1970s makes it difficult to definitively determine the effect of risk factors on later self-reported health status without considering their effect on mortality. CONCLUSION: Because survival rates after a diagnosis of childhood cancer have improved substantially over the past 30 years, the population of survivors now includes those who would have died in earlier decades. Self-reported health status among survivors has not improved despite evolution of treatment designed to reduce toxicities. PRIMARY FUNDING SOURCE: The National Cancer Institute.