Adult Survivors Of Childhood Cancer Research Articles

RONC-11. Permanent alopecia in pediatric patients with medulloblastoma treated by craniospinal irradiation: looking for a threshold dose

Abstract BACKGROUND: Permanent alopecia in adult survivors of childhood cancer is a late effect that has a negative impact on vitality and social function, and it is not clear if it is only associated with radiotherapy or also with high-dose chemotherapy. In this study, we analysed a cohort of medulloblastoma survivors treated with craniospinal irradiation (CSI) with long follow-up looking for radiotherapy parameters associated with permanent hair loss. METHODS: We retrospectively analysed 42 patients with medulloblastoma with median follow up of 10 years. In 27 pts, Eclipse subgroup, the scalp was accurately re-contoured and were estimated specifics dosimetric parameters. Any relationship between presence of alopecia and other characteristics was investigated by univariate and multivariate analysis, in both groups. For each significant predictor variable, a Receiver Operating Characteristic curve was drawn for calculating the Area Under the Curve and identifying the optimal dose discriminatory cut-off value for prediction of alopecia. RESULTS: The best predictor for the occurrence of permanent alopecia was the dose of CSI (OR: 1.002; 95%CI: 1.001-1.003; p=0.003), with a cut-off value of 30.9 Gy. In Eclipse subgroup median Dose hair skin was statistically significant, (OR: 1.216; 95%CI: 1.030-1.435; p=0.021), with a cut-off value of 28.7 Gy. If the median dose of each Gy unit of D median is exceeded, the probability of alopecia increases by 21.6% (3.0% - 43.5%), with a specificity of 90.9%. None of the other variables was statistically significant. CONCLUSIONS: Pediatric Medulloblastoma survivors have a high risk of developing permanent alopecia.Our study supports the finding that permanent hair loss is dose-dependent and identified a threshold dose, the median dose of 28.7 Gy, to prevent the occurrence of permanent alopecia in paediatric patients undergoing radiotherapy. Therefore, we suggest that this dosimetric parameter should be evaluated when planning radiation treatment, especially when planning CSI in low- and standard-risk medulloblastoma.

QOL-31. A psychosocial support program for young adult childhood cancer survivors in Austria: a qualitative evaluation study

PURPOSE: Many adolescents and young adult (AYAs) childhood cancer survivors face disease- or therapy-related late-effects, which limit their participation in various areas of daily life. AYAs are often left alone in our health care system and many worry about their ability to cope with long-term sequelae and some are even lost to follow up. Therefore, in the present study a targeted aftercare program was developed and evaluated with the goal of facilitating three important “life skills”: (1) self-perception, (2) social interaction and conflict management as well as (3) self-conscious communication of support needs. METHODS: A total of n=13 participants (19.2-30.2 years, mean age: 22.8 years) completed a three-day aftercare seminar, at the end of which each participant wrote a reflection letter (“letter to my future self”), elaborating on observed effects of the seminar, applicability of the given information in daily life and the direct impact of the seminar on their individual circumstances. The reflection letters were analyzed using qualitative content analysis. RESULTS: All target life skills were mentioned in the reflection letters. The participants reported individual benefits from the program especially with respect to self-perception and self-confidence, giving and taking feedback, and acceptance of personal strengths and weaknesses. Moreover, the feeling of “not being alone” was associated with the survivors’ experience of emotional and social support. CONCLUSIONS: This evaluation highlights the potential of a one weekend aftercare seminar to address important life skills that are known to positively influence health behavior in AYAs. The detailed description of the seminar can serve as a basis for making this kind of aftercare accessible for other people in similar circumstances.

The relationship between chronic health conditions and employment transitions among survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS).

10051 Background: Chronic health conditions are prevalent among adult survivors of childhood cancer. The impact of health on maintaining full-time (FT) employment, a common indicator of socioeconomic independence, has not been studied in this population. Methods: Self-reported employment status (FT, part-time [PT], unemployed [any reason], not in labor force) was assessed at two timepoints (2002-04 [T1] and 2015-16 [T2]) in adult (≥25y old) survivors of childhood cancer diagnosed between 1970-86. Sex-stratified Poisson regression, adjusted for race and ages at diagnosis and T2, was used to study associations between timing and severity of chronic health conditions (graded per the CTCAE v4.03) and transitions from FT to PT or unemployed. Results: Survivors employed FT at T1 (males=1712, median age [min-max]: 34y [25-53]; females=1337, 33y [25-53]) who reported employment status at T2 were included. At T2 (median time from T1 11.5y [9.4-13.8]), 83% males and 70% females remained employed FT, but 4% and 10% transitioned to PT, and 11% and 12% to unemployed (additional 2% and 8% left the labor force), respectively. Male and female survivors with grade 2 or 3-4 neurologic conditions acquired before T1 or between T1-T2 were at a higher risk of moving from FT to PT or unemployed compared to those with grade 0-1 conditions. Males and females with grade 3-4 respiratory conditions prior to T1 and cardiac and musculoskeletal conditions acquired between T1-T2 were also at higher risk for moving to PT or unemployed (Table). Additional predictors for males included grade 2 vision (before T1 RR 2.3, 95% CI 1.5-3.3; between T1-T2 RR 1.7, 95% CI 1.1-2.7) and endocrine (before T1 RR 1.4, 95% CI 1.1-1.9; between T1-T2 RR 1.7, 95% CI 1.3-2.3) conditions. Conclusions: A substantial portion of adult survivors of childhood cancer with health conditions of varying severity leave FT employment. Increased awareness of all stakeholders may facilitate access to clinical counseling and occupational provisions for flexible and supportive work accommodations to reduce work-related barriers for childhood cancer survivors. [Table: see text]

Associations between diet quality and chronic health conditions (CHCs) in adult survivors of childhood cancer in the St. Jude Lifetime Cohort Study (SJLIFE).

12095 Background: Survivors of childhood cancer are at increased risk for early development of CHCs, including metabolic syndrome (MetS), low bone mineral density (LBMD), and gastrointestinal (GI) disease. Dietary modification is often recommended for prevention and/or treatment of these CHCs in non-cancer populations. However, associations between diet quality and severity of CHCs in adult survivors of childhood cancer are not well known. Methods: Adult survivors (≥10 years post-diagnosis) of childhood cancer who completed a clinical evaluation and Block Food Frequency Questionnaire were included. Diet quality was estimated using the Mediterranean diet score (aMED), with scores ranging from 0 to 9 (increased scores represent higher adherence to diet). CHCs were graded (modified CTCAE) and classified as “low” (grade ≤1 for LBMD and GI; grade ≤2 for MetS) or “high” (grade 2-4 for LBMD and GI; grade 3-4 for MetS). A multivariable linear regression model was used to estimate the mean aMED score by “low” or “high” disease category, with adjustment for age at evaluation, sex, race, education, total energy intake, adjusted BMI, physical activity, smoking, and alcohol consumption. Results: 2,822 survivors of childhood cancer (52.4% male, 83.1% non-Hispanic white) were included. The most prevalent diagnosis was acute lymphoblastic leukemia (34.1%). Time from primary diagnosis was 24.2±8.5 years and age at recruitment was 32.5±8.7 years. Lower adherence to aMED diet was associated with “high” MetS and LBMD, but not GI disease. See the Table for aMED multivariate-adjusted diet quality scores by CHC. Conclusions: In this cross-sectional analysis, MetS and LBMD were associated with poor adherence to the aMED diet. Although longitudinal investigation of associations between diet quality and CHCs in survivors of childhood cancer are needed to determine causal association between diet quality and CHCs in childhood cancer survivors, dietary interventions in early or late cancer survivors may help prevent development or progression of specific treatment related chronic conditions. [Table: see text]

Longitudinal associations between psychosocial morbidity, chronic health conditions, quality of life, and mortality in adult survivors of childhood cancer.

e24147 Background: Psychosocial late effects of childhood cancer are often studied in isolation despite high rates of co-morbidity. We examined patterns of psychosocial morbidity and their associations with subsequent chronic health conditions, quality of life, and mortality in adult survivors of childhood cancer. Methods: St. Jude Lifetime Cohort participants (n = 4,009; median[range] 30.6[18.0-64.8] years of age; 20.4[5.5-52.3] years from diagnosis; 51% female) completed baseline questionnaires. Latent class analysis characterized psychosocial morbidity using 18 individual indicators across four domains: functional independence (e.g., independent living), emotional health (e.g., depressive symptoms), health behaviors (e.g., alcohol use), and socioeconomic status (e.g., employment). Generalized linear models, adjusted for age, sex, and race/ethnicity, examined longitudinal associations between class membership at cohort entry and persistent/new onset Grade 2-4 chronic health conditions from baseline to follow-up (n = 2,355, median f/u = 5.8 years). In separate adjusted models, associations with persistently poor/worsening quality of life at follow-up [SF-36 t-score <40] (n = 2,276, median f/u = 5.7 years) were examined. Cox Proportional models were used to examine associations between class membership and all-cause mortality adjusting for age, sex, and race/ethnicity. Results: Four latent classes were identified: (1) functional non-independence (21%); (2) risky health behaviors (15%); (3) poor emotional health (14%); and (4) low psychosocial morbidity (49%). Survivors in the functional non-independence and poor emotional health classes had increased risk of persistent/new onset Grade 2-4 cardiac (RR = 1.23, 95% CI 1.09-1.40; RR = 1.16, 95% CI 1.04-1.31), pulmonary (RR = 1.28, 95% CI 1.14-1.42, RR = 1.15; 95% CI 1.02-1.29), neurologic (RR = 2.22, 95% CI 1.93-2.56; RR = 1.97, 95% CI 1.70-2.28), and musculoskeletal conditions (RR = 1.85, 95% CI 1.58-2.15; RR = 1.46, 95% CI 1.21-1.75) compared to low psychosocial morbidity. Each class of psychosocial morbidity was significantly associated with persistently poor/worsening quality of life from baseline to follow-up compared to low psychosocial morbidity. Compared to the low psychosocial morbidity class, functional non-independence (HR = 3.37, 95% CI 2.43-4.67), risky health behaviors (HR = 1.77, 95% CI 1.21-2.59), and poor emotional health (HR = 2.70, 95% CI 1.89-3.84) classes were associated with increased risk of all-cause mortality. Conclusions: Baseline psychosocial morbidities experienced by survivors of childhood cancer are associated with persistent and new onset chronic health conditions, poor/worsening quality of life, and mortality. Interventions targeting psychosocial late effects may mitigate adverse health outcomes in survivors.

Modifiable risk factors for late mortality among five-year survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

10014 Background: The impact ofmodifiable lifestyle and cardiovascular risk factors (CVRFs) on risk for late mortality in adult survivors of childhood cancer is not well established. Methods: All-cause and health-related late (>5 years from cancer diagnosis) mortality (HRM; excludes death from primary cancer and external causes) were evaluated in five-year survivors diagnosed <21 years of age using the National Death Index through 2017. Modifiable lifestyle (smoking status, alcohol use, physical activity, body mass index [BMI]; combined to create a score [0-4] and categorized as unhealthy [0-2], moderate [2.5 or 3], healthy [3.5 or 4]) and CVRFs (hypertension [HTN], diabetes [DM], dyslipidemia) were assessed as time-varying covariates. Standardized mortality ratios (SMRs) and absolute excess risk of death per 1000 person-years (AER) with 95% confidence intervals (CIs) were estimated. Multivariable models estimated the relative risk (RR) of death adjusted for demographic and socioeconomic variables. Results: Among 20,051 adult survivors (median age 40.0 years, range 18.7 – 67.7), 19% reported ≥1 CVRF (13% HTN, 9% dyslipidemia, 5% DM) and few reported a healthy lifestyle (29% healthy, 40% moderate, 31% unhealthy). There were 1476 deaths due to health-related causes. While all survivors experienced an increased risk of HRM compared to the US population, risk was lower among those with a healthy vs. unhealthy lifestyle (SMR 3.5, 95% CI 3.1-3.9 vs. 6.2, 5.7-6.7) and very high among underweight survivors (11.1, 9.3-13.3) and those with both HTN and DM (13.0, 9.2-18.0). Stratified by lifestyle score, the excess risk of HRM was lowest in those with a healthy lifestyle across survival time (Table). Similar trends were seen when stratified by 0, 1 and 2 CVRFs. In multivariable models, compared to survivors with no CVRFs and healthy lifestyle, no CVRFs and unhealthy lifestyle was associated with a 50% increased risk of HRM (RR 1.5, 95% CI 1.2-1.8) and unhealthy lifestyle plus HTN a 2-fold increased risk of HRM (2.2, 1.6-2.8). Regardless of lifestyle group, ≥2 CVRF increased risk for HRM at least 2-fold (p-values <0.001). Conclusions: A reduction in excess deaths is observed among adult survivors of childhood cancer with a healthy lifestyle and no CVRFs as they age. Interventions that target improved lifestyle choices and prevention or aggressive treatment of modifiable CVRFs may reduce risk for late mortality. [Table: see text]

Bone mineral density (BMD) deficits in adult survivors of childhood cancer: Attributable risks and long-term consequences.

e22021 Background: Survivors of childhood cancer are at risk for BMD deficits. Contributions of treatment, physical and lifestyle factors to overall risk are unknown as are long-term consequences of moderate and severe deficits. Methods: BMD deficits were evaluated in 3919 five-year childhood cancer survivors in the St. Jude Lifetime Cohort (median age 31.7 [range 18.0-69.9] years, 52.6% male, 80.4% non-Hispanic White) using lumbar quantitative computed tomography and classified by age- and sex-specific Z-scores as moderate (<-1SD) or severe deficit (<-2SD). Multivariable logistic regression estimated odds ratios (OR), risk factor attributable fractions (AF), and associations between BMD deficits and long-term outcomes (social/functional outcomes, fracture, mortality). Results: BMD deficits were moderate in 21.7% (95% CI 20.4%-23.0%) and severe in 6.9% (95% CI 6.1%-7.7%) of survivors. Risk factors for moderate deficit included age 5-9 years at diagnosis (OR 1.63, 95% CI 1.31-2.03), >20Gy cranial radiotherapy (OR 1.75, 95% CI 1.41-2.18), >3240 mg/m2 glucocorticoids (OR 1.34, 95% CI 1.09-1.66), and smoking (OR 1.55, 95% CI 1.27-1.90). AF were 7.2%, 0.7%, 5.9%, and 6.1% respectively; 80.1% of risk was unexplained. Risk factors for severe deficits included age 5-9 years at diagnosis (OR 1.95, 95% CI 1.36-2.80), BMI<18.5 kg/m2 (OR 3.95, 95% CI 2.28-6.85), >20Gy cranial radiotherapy (OR 5.22, 95% CI 3.74-7.30), testicular/pelvic radiation (OR 1.70, 95% CI 1.19-2.44), smoking (OR 1.71, 95% CI 1.21-2.43), and physical inactivity (OR 1.91, 95% CI 1.10-3.33). AFs were 10.9%, 7.0%, 2.9%, 11.5%, 6.7%, and 3.2% respectively; 57.8% of risk was unexplained. Those with deficits were less likely to live independently, to be employed, and more likely to require assistance with personal care needs (Table). Fracture risk was greatest among those with any BMD deficit, and mortality risk was greatest among those with severe deficits. Conclusions: Deficits in BMD among childhood cancer survivors are related not only to treatment, but also to modifiable health behaviors. In this population, children exposed to radiation or glucocorticoids are at greatest risk for poor bone quality and should be counselled to optimize health behaviors.[Table: see text]

Interest in fertility status assessment among young adult survivors of childhood cancer.

Cancer survivors who received gonadotoxic treatment are at-risk for future infertility and may desire a fertility status assessment (FSA), defined as semen analysis for males and consultation with a reproductive specialist for females. The purpose of this study was to describe the proportion of, and factors associated with, interest in FSA among young adult survivors of childhood cancer. This retrospective single-institution review included patients with prior gonadotoxic treatment, aged 18-25 years and >1year from cancer treatment completion, who received a fertility-focused discussion during survivorship. Documentation of interest in and completion of FSA, worry about infertility, sociodemographic, and clinical characteristics were abstracted from medical records. Multivariable logistic regression was performed to calculate odds ratios (OR) and 95% confidence intervals (95%CI) for factors associated with interest in FSA. Survivors (N=259) were on average 19.2 ± 1.2 years at their fertility discussion; 55.6% were male and 57.9% non-Hispanic white. Interest in FSA was reported by 50.7% of males and 46.1% of females. Factors related to interest in FSA for males and females respectively, included worry about infertility (OR 2.40, 95%CI 1.11-5.27, p=0.026 and OR 4.37, 95%CI 1.71-12.43, p=0.003) and ≥2 fertility discussions (OR 3.78, 95%CI 1.70-8.75, p=0.001 and 2.45, 95%CI 1.08-5.67, p=0.033). Among males, fertility preservation consult/procedure at diagnosis (OR 3.02, 95%CI 1.09-9.04, p=0.039) and high-risk for infertility (OR 2.47, 95%CI 1.07-5.87, p=0.036) were also associated with interest in FSA. Cancer survivors are interested in FSA, particularly those who have had repeated fertility-focused discussions during survivorship care and who report worry about infertility.

Protein, fat, and animal food intakes and premature aging in adult survivors of childhood cancer: St. Jude Lifetime (SJLIFE) cohort.

10055 Background: Childhood cancer survivors are a growing population who appear to be at higher risk for premature aging and age-related chronic health conditions than their peers with no history of cancer. Diet affects many hallmarks of aging, such as inflammation, metabolic dysfunctions, and molecular and epigenetic changes, leading to impairment in physical and cognitive functions and premature death. High consumption of animal foods that are high in protein and fat increase risk for many age-related chronic diseases. However, some studies found protein intake was beneficial for physical frailty in elderly and cancer survivors. Methods: Adult survivors (> = 18 years old) of childhood cancer survivors enrolled in the SJLIFE Cohort between 2007 and 2017 completed a 110-item food frequency questionnaire at study entry (n = 3,322). Survivors’ sociodemographic, cancer, cancer treatments, and medical history data were abstracted from medical records. Health conditions self-reported after cancer diagnosis were clinically validated. Premature aging was assessed using the Deficit Accumulation Index (DAI) based on 45 aging-related health conditions. DAI is categorized into low (< 0.2), medium (0.2-0.34) and high (> 0.35) aging risk groups. Odds ratios (OR) and 95% confidence intervals (CI) were estimated using multinomial logistic regressions adjusting for potential confounders. Results: The average age of survivors at baseline was 31 years. Approximately half of the survivors were women, and 82% were white, non-Hispanic. 20% and 8% of survivors were at medium and high risk for aging, respectively. Survivors at high risk for aging tended to be female, smokers, have low socioeconomic status, and received radiation therapy to head and neck, chest, spine or abdomen compared to those at low aging risk. Higher protein intake was associated with a less risk of premature aging (OR = 0.74, 95% CI: 0.58-0.95 for high aging risk group; OR = 0.91, 95% CI: 0.78-1.07 for medium aging risk group, per increment of 5% of total energy intake). On the other hand, higher fat intake was related to an increased risk of premature aging (OR = 1.14, 95% CI: 1.01-1.29 for high aging risk group; OR = 0.99, 95% CI: 0.91-1.08 for medium aging risk group, per increment of 5% of total energy intake). However, substituting monounsaturated fat for other types of fat was associated with a lower risk of premature aging (OR = 0.81 95% CI: 0.70-0.95 for high aging risk group). Red meat (OR = 1.11, 95% CI: 0.87-1.42 for high aging risk group) and dairy intake (OR = 0.99, 95% CI: 0.72-1.38 for high aging risk group) was not related to risk of premature aging. Conclusions: Consuming protein and fat from healthy foods may lower the risk of premature aging in childhood cancer survivors.

The Perceived Impact of COVID-19 on the Mental Health Status of Adolescent and Young Adult Survivors of Childhood Cancer and the Development of a Knowledge Translation Tool to Support Their Information Needs.

BackgroundAdolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2).MethodsBetween May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs.ResultsNinety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed.DiscussionAYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.

Self-Disclosure by Childhood Cancer Survivors and Its Psychological Effects

The long-term survival rates for childhood cancers have continued to rise, making it critical to understand the long-term outcomes and the follow-up needs of those diagnosed with childhood cancer. Long-term survival is associated with both secondary illnesses and psychological distress; however, the self-disclosure of one’s history of childhood cancer could promote self-care and social support among childhood cancer survivors. Nevertheless, many childhood cancer survivors are reluctant to self-disclosure, particularly in Japan, as its cultural context emphasizes collective homogeneity rather than individualism. This qualitative, descriptive study aimed to understand the experiences of adult childhood cancer survivors regarding their self-disclosure of their disease history to their lovers, friends, and community. Between October 2017 and November 2018, 13 adults (9 men, 4 women; age range: 20–39 years) who had been diagnosed with childhood cancer and were five years or more past their last treatment participated in semi-structured interviews. A thematic analysis was conducted using the Steps for Coding and Theorization (SCAT). From the interview data, three concepts (i.e., Increased Desire for Self-Disclosure, Joy at Having Enriched the Lives of Themselves and Others, and Increased Expectations for Relationship Change and Disappointment), along with eight themes, were extracted. Self-disclosure was found to have both positive and negative effects, but the willingness to risk self-disclosure promotes the development of social and intimate relationships among childhood cancer survivors. Negative experiences or frustration from poor responses to self-disclosure can interfere with future self-disclosure attempts. Thus, self-disclosure could serve as a means of overcoming one’s disease. Healthcare providers involved in long-term follow-up should promote the benefits of self-disclosure in overcoming a childhood cancer diagnosis.

Psychological Well-Being, Cognitive Functioning, and Quality of Life in 205 Adolescent and Young Adult Childhood Cancer Survivors Compared to Healthy Peers.

The majority of the studies underlined how adolescent and young adult (AYA) Cancer Survivors had no significant differences in their well-being and quality of life compared with a control group of healthy counterparts, although French et al. (2013) found less years of education among cancer survivors. The present study aimed at comparing AYA cancer survivors and a control group of peers who had no history of serious illness, in terms of well-being, cognitive functioning, and perceptions of life. Participants in this study were 205 AYA cancer survivors, 126 males, off therapy from a mean of 10.87 years (SD = 4.91), with a mean age of 18.96 (SD = 3.08), recruited during follow-up visits and healthy counterparts (n = 205), matched for age and gender. They all completed self-report questionnaires: Ladder of Life, BSI-18 and Cognitive problems. Paired t test evidenced significant differences between survivors (Mean = 6.19; SD = 2.07) and controls (Mean = 6.88; SD = 2.02) in perceptions of quality of life regarding 5 years before the current time [t(204) = −3.39; p = 0.001], with a lower level for childhood cancer survivors. Specifically, Hierarchical regression (R2 = 0.05, p = 0.04) identified a shorter time since the completion of treatment (β = 0.18, p = 0.03) and a trend of stem cell transplantation experience (β = −0.11, p = 0.06) as factors associated with negative perception of precedent quality of life. The AYA cancer survivors reported lower cognitive difficulties (Mean = 1.46) than controls (Mean = 1.56) [t(204) = −3.41; p = 0.001]: in memory (Meanclinical = 1.32 vs Meancontrol = 1.50) [t(204) = −4.52; p = 0.001], in concentration (Meanclinical = 1.36 vs Meancontrol = 1.54) [t(204) = −4.66; p = 0.001] and in mental organization skills (Meanclinical = 1.47 vs Meancontrol = 1.56) [t(204) = −2.56; p = 0.01], even if they had a lower educational attainment [X = 131.28; p = 0.001]. They showed similar satisfaction with their psychological well-being and their lives as healthy counterparts, except for past life perceptions associated with the cancer period. Important recommendations for future research and clinical suggestions could be given.

Psychosocial developmental milestones of young adult survivors of childhood cancer

PurposeThe study aimed to compare the psychosocial development of young adult survivors of childhood cancer (YACCS) with a norm group of young adults from the general population.MethodsFrom 2017 to 2020, 558 YACCS (18–30 years, 51% female, 10.9% CNS cancer) who participated in the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort (diagnosed 1963–2001) part 2 completed the Course of Life Questionnaire (CoLQ), assessing the achievement of milestones. Items were grouped into the scales autonomy, psychosexual, and social development. Differences between YACCS and norm group were examined with ANOVA and Cohen’s d (CoLQ scales) and with logistic regression analysis and odds ratio (OR) (CoLQ items), for the total group and YACCS of CNS cancer.ResultsThe total group of YACCS did not report a less favorable psychosocial development than the norm group. YACCS of CNS cancer scored lower than the norm group (p < 0.001) on the scales autonomy (d = − 0.36) and psychosexual (d = − 0.46). Additionally, on half of the items of autonomy (0.25 ≤ OR ≤ 0.34), psychosexual (0.30 ≤ OR ≤ 0.48), and social (0.23 ≤ OR ≤ 0.47) development, YACCS of CNS cancer were less likely (p < 0.01) than the norm group to have achieved the milestones.ConclusionOverall, psychosocial development of YACCS was as favorable as the norm, but YACCS of CNS cancer were at risk of an unfavorable psychosocial development in all domains. Monitoring psychosocial development should be included in the standards of psychosocial care, especially for CNS cancer patients and survivors, to be able to trace delay. Personalized interventions should be offered to improve the psychosocial development in an early stage.

Abstract 212: Artificial Intelligence To Predict Late Onset Cardiomyopathy Among Childhood Cancer Survivors Using Electrocardiogram, Echocardiogram, And Clinical Data

Objectives: Applying machine learning to predict the 10-year cardiomyopathy risk among adult survivors of childhood cancer. Methods: The St. Jude Lifetime Cohort Study (SJLIFE) is an ongoing study of adult survivors of childhood cancer with in-person clinical evaluations. ECG and ECHO data were obtained on participants who did not have cardiomyopathy (defined as left ventricular ejection fraction &lt; 50% or absolute drop from baseline ≥ 10%) at initial SJLIFE evaluation and who had at least two evaluations with ECHO screening. Predictors including ECG-AI based risk (cardiomyopathy risk from our previously develop AI model using ECG-alone), ECHO parameters, age, race, sex, BMI, primary cancer diagnosis, heart rate, respiratory rate, systolic and diastolic blood pressures, smoking, diabetes, hypertriglyceridemia, hypertension, or hypercholesterolemia. Light gradient boosting machines (LGBM) were applied to predict risk for cardiomyopathy using training (60%) and validation (20%) data. The hold-out (20%) data was used to evaluate predictive performance as sensitivity, specificity, precision, negative predictive value (NPV) and AUC. Shapley Additive exPlanations method (SHAP) was used to uncover predictors’ importance. Findings: The study population included 1,046 survivors with mean age±std of 32.2±8.0. The median time between baseline and follow-up evaluations was 5.2 years (0.5-9.5). In the hold out set, a model using ECHO parameters-only yielded an AUC of 0.68 (CI: 0.55-0.81), ECG-AI based risk alone yielded a hold-out test AUC of 0.87 (CI: 0.79-0.95), and an AUC of 0.89 (CI: 0.82-0.96) was obtained on LGBM model when ECG, ECHO, and clinical risk factors were used together. The final model classified cardiomyopathy with 80% sensitivity, 82% specificity, precision of 32%, and NPV of 98%. SHAP results showed that ECG-AI based risk, LV Global Longitudinal Peak Strain, LV Diastolic Volume, LV systolic volume, and cumulative anthracycline dose (&gt;200 mg/m 2 ) were associated with an increased risk, and LVOT Peak gradient was associated with decreased risk. Conclusion: Artificial intelligence-based analyses with ECG and ECHO images may aid in cardiomyopathy risk prediction for at-risk survivors of childhood cancer.

The Impact of Hispanic Ethnicity and Language on Communication Among Young Adult Childhood Cancer Survivors, Parents, and Medical Providers and Cancer-Related Follow-Up Care.

The triad of communication between young adult childhood cancer survivors (YACCSs), their parents, and their medical providers is an important process in managing health care engagement. This study sought to identify communication patterns among this triad, factors associated with communication, and engagement of survivorship care. We analyzed data from Project Forward, a population-based study that surveyed YACCSs and their parents. YACCSs were on average age 20 years, 7 years from diagnosis, 50% female, and 57% identified as Hispanic/Latino (N = 160 dyads). Latent class analysis of nine communication indicators from parent and YACCS surveys identified distinct classes of communication between YACCSs, parents, and medical providers. Associations between resulting classes and YACCS/parent characteristics were examined using multinomial logistic regression. Logistic regression was used to examine the association between communication classes and cancer-related follow-up care. Latent class analysis identified three classes of triad communication: (1) high health care-focused communication (37.5%), (2) high comprehensive communication (15.6%), and (3) overall low communication (46.9%). After adjusting for covariates, greater time since diagnosis was associated with reduced odds of membership in class 2 while dyads with Spanish-speaking Hispanic parents were more likely to be in class 2 (v class 3). Additionally, YACCSs who were in either of the high communication groups were more likely to have received recent follow-up care. Examining language preference provides an important contextual understanding as we found Spanish-speaking Hispanic parents engaged in high communication, which was associated with cancer-related follow-up care. Yet, our results also support the need to enhance communication between this triad to improve outcomes.

Smartphone-based Ecological Momentary Assessment to study "scanxiety" among Adolescent and Young Adult survivors of childhood cancer: A feasibility study.

ObjectiveScan‐related anxiety (“scanxiety”) refers to the fear, stress, and anxiety in anticipation of tests and scans in follow‐up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real‐world, real‐time capture of scanxiety using patients' personal smartphone.MethodsAdolescent and Young Adult survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol.ResultsThirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety.ConclusionsFindings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety.

Sickness absence and disability pension trajectories in childhood cancer survivors and references- a Swedish prospective cohort study.

BackgroundChildhood cancer survivors are at high risk of chronic health conditions. We aimed to explore future long-term sickness absence and disability pension in young adult childhood cancer survivors and matched references.MethodsWe performed a prospective cohort study using microdata from five Swedish nationwide registers. Among all individuals born 1976–1998 and living in Sweden, we included 3632 childhood cancer survivors and 17,468 matched references that could be followed-up for 15, 10, or 5 years, respectively. A group-based trajectory model was applied to identify trajectories of mean annual sickness absence and/or disability pension days (SADP) in each sub-cohort, with 95% confidence intervals (CI). Potential risk factors for trajectory belonging were explored using χ2 test and multinomial logistic regression.ResultsMost young adult childhood cancer survivors (90.2–96.5%) and references (97.4–98.8%) followed a No SADP trajectory. A larger proportion of childhood cancer survivors than references followed a Moderate (33–102 days/year) or High (115–260 days/year) SADP trajectory (15-year follow-up cohorts: Moderate 4.6% versus 1.2%; High 5.1% versus 1.5%). Childhood cancer survivors of central nervous system (CNS) tumors were at higher risk of the High SADP trajectory than childhood cancer survivors of hematological or non-CNS solid tumors (hematological versus CNS: odds ratio = 2.30, 95% CI 1.23–4.30; hematological versus non-CNS: odds ratio = 0.32, 95% CI 0.13–0.79).ConclusionsAlthough most young adult childhood cancer survivors had no SADP during follow-up, 9.7% experienced moderate or high numbers of SADP days/year throughout the 15-year follow-up; compared to 2.7% among references. CNS tumor survivors were at particular risk of SADP long-term and need extra attention in their future work prospect.

Maintenance of Sertoli Cell Number and Function in Immature Human Testicular Tissues Exposed to Platinum-Based Chemotherapy-Implications for Fertility Restoration.

Background: Retrospective studies in adult survivors of childhood cancer show long-term impacts of exposure to alkylating chemotherapy on future fertility. We recently demonstrated germ cell loss in immature human testicular tissues following exposure to platinum-based chemotherapeutic drugs. This study investigated the effects of platinum-based chemotherapy exposure on the somatic Sertoli cell population in human fetal and pre-pubertal testicular tissues. Methods: Human fetal (n = 23; 14–22 gestational weeks) testicular tissue pieces were exposed to cisplatin (0.5 or 1.0 μg/ml) or vehicle for 24 h in vitro and analysed 24–240 h post-exposure or 12 weeks after xenografting. Human pre-pubertal (n = 10; 1–12 years) testicular tissue pieces were exposed to cisplatin (0.5 μg/ml), carboplatin (5 μg/ml) or vehicle for 24 h in vitro and analysed 24–240 h post-exposure; exposure to carboplatin at 10-times the concentration of cisplatin reflects the relative clinical doses given to patients. Immunohistochemistry was performed for SOX9 and anti-Müllerian hormone (AMH) expression and quantification was carried out to assess effects on Sertoli cell number and function respectively. AMH and inhibin B was measured in culture medium collected post-exposure to assess effects on Sertoli cell function. Results: Sertoli cell (SOX9+ve) number was maintained in cisplatin-exposed human fetal testicular tissues (7,647 ± 459 vs. 7,767 ± 498 cells/mm2; p > 0.05) at 240 h post-exposure. No effect on inhibin B (indicator of Sertoli cell function) production was observed at 96 h after cisplatin (0.5 and 1.0 μg/ml) exposure compared to control (21 ± 5 (0.5 μg/ml cisplatin) vs. 23 ± 7 (1.0 μg/ml cisplatin) vs. 25 ± 7 (control) ng/ml, p > 0.05). Xenografting of cisplatin-exposed (0.5 μg/ml) human fetal testicular tissues had no long-term effect on Sertoli cell number or function (percentage seminiferous area stained for SOX9 and AMH, respectively), compared with non-exposed tissues. Sertoli cell number was maintained in human pre-pubertal testicular tissues following exposure to either 0.5 μg/ml cisplatin (6,723 ± 1,647 cells/mm2) or 5 μg/ml carboplatin (7,502 ± 627 cells/mm2) compared to control (6,592 ± 1,545 cells/mm2). Conclusions: This study demonstrates maintenance of Sertoli cell number and function in immature human testicular tissues exposed to platinum-based chemotherapeutic agents. The maintenance of a functional Sertoli cell environment following chemotherapy exposure suggests that fertility restoration by spermatogonial stem cell (SSC) transplant may be possible in boys facing platinum-based cancer treatment.

Effect of physical activity on fatigue in childhood cancer survivors: a systematic review.

Many children, adolescents, and young adult survivors of childhood cancer experience fatigue following cancer treatment. Physical activity has been shown to be effective in improving cancer-related fatigue in adult survivors, but there is a lack of evidence on its effect in childhood cancer survivors. In addition, there are no guidelines for treatment of fatigue in childhood cancer survivors. The purpose of this study was to examine the existing literature on the effect of physical activity on fatigue in children, adolescents, and young adult survivors of childhood cancer. We conducted a systematic review to examine the effect of physical activity on fatigue in children, adolescents, and young adult survivors of childhood cancer. Nine studies were included. Most of the studies included reported an increase in physical activity and a decline in fatigue in the target patient population. Interpretation of these findings is limited due to small sample sizes, inadequate length of follow-up, and variability among reviewed studies. Quantitative analysis was not conducted due to significant variability in both the type of physical activity implemented and in the measurement of fatigue. Further research, with a larger sample size and consistency in both physical activity interventions and measurement of fatigue, is needed to add greater precision and confidence in the effect of physical activity on fatigue in childhood cancer survivors. Results of this research will help guide future recommendations on physical activity for the treatment of cancer-related fatigue in children, adolescents, and young adult survivors of childhood cancer.

A Mixed-Methods Investigation of Medical Follow-Up in Long-Term Childhood Cancer Survivors: What Are the Reasons for Non-Attendance?

As long-term childhood cancer survivors (CCS) are at risk for late effects, ongoing medical care is crucial to detect and treat physical illnesses as early as possible. However, previous research from around the world has shown that many adult survivors did not participate in long-term medical follow-up. This study aimed to provide insight into German survivors’ care situation, with a particular focus on barriers to follow-up care. We investigated a sample of adult CCS (N = 633) (age M = 34.92; SD = 5.70 years) drawn from the German Childhood Cancer Registry’s oldest cohort (> 25 years after diagnosis). Our analyses included data from a standardized medical examination, a self-report questionnaire, and in-depth interviews with a subsample (n = 43). Half of the participants (n = 314, 49.6%) reported participating in some kind of medical follow-up. In a logistic regression analysis, attendance of medical follow-up care was associated with higher age. Reasons for non-attendance were assigned to four categories: lack of information about medical follow-up and/or its purpose (n = 178), termination by the health care provider (n = 53), structural barriers (n = 21), and emotional-motivational aspects (n = 17). The interviews contributed to a better understanding of how these reported barriers played out in the care of individual survivors. Further, they revealed that some survivors currently in medical follow-up had had periods without follow-up care in the past—which were also in many cases related to a lack of information, both on the part of health care providers and CCS themselves. The results indicated that a large proportion of long-term CCS do not receive the recommended follow-up care. Further, there is a great need for more information regarding the aims of long-term medical follow-up and available offers. This is an important prerequisite for CCS to make informed decisions.