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Although survivors of childhood cancer are at an increased risk, little is known about the prevalence of chronic pain, associated interference, and daily pain experiences. Survivors (N 5 233; mean age 5 40.8 years, range 22-64 years; mean time since diagnosis 5 32.7 years) from the Childhood Cancer Survivor Study completed pain and psychosocial measures. Survivors with chronic pain completed 2-week, daily measures assessing pain and psychological symptoms using mHealth-based ecological momentary assessment. Multivariable-modified Poisson and linear regression models estimated prevalence ratio estimates (PR) and mean effects with 95% confidence intervals (CI) for associations of key risk factors with chronic pain and pain interference, respectively. Multilevel mixed models examined outcomes of daily pain and pain interference with prior day symptoms. Ninety-six survivors (41%) reported chronic pain, of whom 23 (24%) had severe interference. Chronic pain was associated with previous intravenous methotrexate treatment (PR 5 1.6, 95% CI 1.1-2.3), respiratory (PR 5 1.8, 95% CI 1.2-2.5), gastrointestinal (PR 5 1.6, 95% CI 11.0-2.3), and neurological (PR 5 1.5, 95% CI 1.0-2.1) chronic health conditions, unemployment (PR 5 1.4, 95% CI 1.0-1.9) and clinically significant depression and anxiety (PR 5 2.9, 95% CI 2.0-4.2), as well as a diagnosis of childhood Ewing sarcoma or osteosarcoma (PR 5 1.9, 95% CI 1.0-3.5). Higher pain interference was associated with cardiovascular and neurological conditions, unemployment and clinical levels of depression and/or anxiety, and fear of cancer recurrence. For male, but not female survivors, low sleep quality, elevated anxiety, and elevated depression predicted high pain intensity and interference the next day. A substantial proportion of childhood cancer survivors experience chronic pain and significant associated interference. Chronic pain should be routinely evaluated, and interventions are needed. [ABSTRACT FROM AUTHOR]

Purpose: Childhood, adolescent, and young adult (CAYA) cancer survivors (age 0–39 years at diagnosis) are at increased risk of cardiovascular disease (CVD). Family history of early heart disease increases the risk of CVD in the general population; however, it is unknown whether this association is seen in CAYA cancer survivors. Methods: Self-report data from the National Health and Nutrition Examination Survey (2005–2018) were used to identify CAYA survivors (>5 years post-diagnosis). The risk of CVD based on family history status (parent or sibling with a diagnosis of heart attack or angina before age 50 years), personal sociodemographic factors, personal medical history factors, and personal behavioral risk factors was determined using logistic regression models. Results: Included were 95 CAYA survivors with CVD and 491 CAYA survivors without CVD. The odds of CVD were significantly higher in survivors with a first-degree family history of early heart disease (odds ratio [OR]: 2.06, 95% confidence interval [CI]: 1.14–3.74). A history of diabetes (OR: 2.61, 95% CI: 1.41–4.84), hypertension (OR: 1.81, 95% CI: 1.04–3.16), and any smoking (OR: 2.19, 95% CI: 1.19–4.02) was also associated with higher odds of CVD in CAYA survivors. Reporting any physical activity in the past month was associated with lower odds (OR: 0.54, 95% CI: 0.30–0.97) of CVD. Conclusions: Family history of early heart disease was associated with increased odds of CVD in CAYA cancer survivors. Obtaining complete and accurate family history information is important both at time of diagnosis and throughout follow-up. [ABSTRACT FROM AUTHOR]

[Display omitted] • The neurobiology of the developing brain is unique. • This may leave the paediatric brain more vulnerable to chemotherapy-induced cognitive impairment. • Age-matched preclinical models are necessary to develop relevant findings for childhood cancer survivors. Childhood is recognised as a period of immense physical and emotional development, and this, in part, is driven by underlying neurophysiological transformations. These neurodevelopmental processes are unique to the paediatric brain and are facilitated by augmented rates of neuroplasticity and expanded neural stem cell populations within neurogenic niches. However, given the immaturity of the developing central nervous system, innate protective mechanisms such as neuroimmune and antioxidant responses are functionally naïve which results in periods of heightened sensitivity to neurotoxic insult. This is highly relevant in the context of paediatric cancer, and in particular, the neurocognitive symptoms associated with treatment, such as surgery, radio- and chemotherapy. The vulnerability of the developing brain may increase susceptibility to damage and persistent symptomology, aligning with reports of more severe neurocognitive dysfunction in children compared to adults. It is therefore surprising, given this intensified neurocognitive burden, that most of the pre-clinical, mechanistic research focuses exclusively on adult populations and extrapolates findings to paediatric cohorts. Given this dearth of age-specific research, throughout this review we will draw comparisons with neurodevelopmental disorders which share comparable pathways to cancer treatment related side-effects. Furthermore, we will examine the unique nuances of the paediatric brain along with the somatic systems which influence neurological function. In doing so, we will highlight the importance of developing in vitro and in vivo paediatric disease models to produce age-specific discovery and clinically translatable research. [ABSTRACT FROM AUTHOR]

Many childhood cancer survivors (CCS) could benefit from improved knowledge about their cancer diagnosis, the treatments received, and associated risks during the period when they transition into adult aftercare. Interventions that support the transition from pediatric to adult care have showed high patient satisfaction. We developed an educational workbook, "Life After the Janeway," to support CCS transition into adult care. We evaluated its understandability, actionability, and overall acceptability, using an online survey based on the Agency for Healthcare Research and Quality's Patient Education Materials Assessment Tool for Printable Material (PEMAT-P). Ten participants completed the survey. The overall PEMAT-P score was 94.06 (SD ± 7.40). Mean scores for understandability and actionability were 92.83 (SD ± 8.79) and 98.15 (SD ± 5.24) respectively. Interrater reliability found strong agreement across survey items. Participants support efforts to improve transition and felt positive about the intervention. The workbook was shown to be understandable and actionable to likely users. The next steps will focus on delivering the workbook to CCS going through their transition of care and exploring developing the workbook in an electronic format. [ABSTRACT FROM AUTHOR]

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

Abstract Background It is well-established that cancer treatment substantially increases the risk of long-term adverse health outcomes among childhood cancer survivors. However, there is limited research on the underlying mechanisms. To elucidate the pathophysiology and a possible causal pathway from treatment exposures to cardiometabolic conditions, we conducted epigenome-wide association studies (EWAS) to identify the DNA methylation (DNAm) sites associated with cancer treatment exposures and examined whether treatment-associated DNAm sites mediate associations between specific treatments and cardiometabolic conditions. Methods We included 2052 survivors (median age 33.7 years) of European ancestry from the St. Jude Lifetime Cohort Study, a retrospective hospital-based study with prospective clinical follow-up. Cumulative doses of chemotherapy and region-specific radiation were abstracted from medical records. Seven cardiometabolic conditions were clinically assessed. DNAm profile was measured using MethylationEPIC BeadChip with blood-derived DNA. Results By performing multiple treatment-specific EWAS, we identified 935 5′-cytosine-phosphate-guanine-3′ (CpG) sites mapped to 538 genes/regions associated with one or more cancer treatments at the epigenome-wide significance level (p

Purpose: As childhood cancer survivors (CCS) age, they face numerous long-term consequences, or late effects, from their cancer treatments. Late effects may be mitigated by health-promoting behaviors, including the avoidance of substance use. CCS with greater depression symptomology have reported greater substance use, but whether their habits are associated with the mental health of their caregivers is unknown. The aim of this study was to examine caregiver psychosocial correlates of CCS substance use.Methods: This study utilizes data from the Project Forward pilot study, which collected data from 129 CCS-caregiver dyads (CCS mean age = 19.43, SD = 2.78; years since diagnosis = 7.62, SD = 2.06) from two large hospitals in Los Angeles County. CCS provided self-reported information on substance use, while caregivers self-reported on posttraumatic stress symptomatology (PTSS) associated with their child's cancer and current depressive symptoms.Results: Among CCS, prior 30-day tobacco, marijuana, binge drinking, and polysubstance use were 12.50%, 14.17%, 13.18%, and 12.40%. In multivariable logistic regression models, caregiver PTSS was independently positively associated with CCS tobacco use. No other significant relationships between caregiver mental health (PTSS or depressive symptoms) and CCS substance use were observed.Conclusion: These findings suggest that caregiver PTSS is partially associated with CCS behavioral health. Survivorship care may improve tobacco use prevention efforts by incorporating family or caregiver mental health needs. Future research should examine the potential mediating effect of CCS mental health, including depressive symptoms, on this relationship. [ABSTRACT FROM AUTHOR]

Background: It is well-established that cancer treatment substantially increases the risk of long-term adverse health outcomes among childhood cancer survivors. However, there is limited research on the underlying mechanisms. To elucidate the pathophysiology and a possible causal pathway from treatment exposures to cardiometabolic conditions, we conducted epigenome-wide association studies (EWAS) to identify the DNA methylation (DNAm) sites associated with cancer treatment exposures and examined whether treatment-associated DNAm sites mediate associations between specific treatments and cardiometabolic conditions. Methods: We included 2052 survivors (median age 33.7 years) of European ancestry from the St. Jude Lifetime Cohort Study, a retrospective hospital-based study with prospective clinical follow-up. Cumulative doses of chemotherapy and region-specific radiation were abstracted from medical records. Seven cardiometabolic conditions were clinically assessed. DNAm profile was measured using MethylationEPIC BeadChip with blood-derived DNA. Results: By performing multiple treatment-specific EWAS, we identified 935 5′-cytosine-phosphate-guanine-3′ (CpG) sites mapped to 538 genes/regions associated with one or more cancer treatments at the epigenome-wide significance level (p < 9 × 10−8). Among the treatment-associated CpGs, 8 were associated with obesity, 63 with hypercholesterolemia, and 17 with hypertriglyceridemia (false discovery rate-adjusted p < 0.05). We observed substantial mediation by methylation at four independent CpGs (cg06963130, cg21922478, cg22976567, cg07403981) for the association between abdominal field radiotherapy (abdominal-RT) and risk of hypercholesterolemia (70.3%) and by methylation at three CpGs (cg19634849, cg13552692, cg09853238) for the association between abdominal-RT and hypertriglyceridemia (54.6%). In addition, three CpGs (cg26572901, cg12715065, cg21163477) partially mediated the association between brain-RT and obesity with a 32.9% mediation effect, and two CpGs mediated the association between corticosteroids and obesity (cg22351187, 14.2%) and between brain-RT and hypertriglyceridemia (cg13360224, 10.5%). Notably, several mediator CpGs reside in the proximity of well-established dyslipidemia genes: cg21922478 (ITGA1) and cg22976567 (LMNA). Conclusions: In childhood cancer survivors, cancer treatment exposures are associated with DNAm patterns present decades following the exposure. Treatment-associated DNAm sites may mediate the causal pathway from specific treatment exposures to certain cardiometabolic conditions, suggesting the utility of DNAm sites as risk predictors and potential mechanistic targets for future intervention studies. [ABSTRACT FROM AUTHOR]

• Persistent peripheral nerve changes are seen many years after exposure to neurotoxic chemotherapy in childhood. • Sensory nerves are predominantly affected. • Neurophysiological changes are chemotherapy-specific and most evident after cisplatin treatment. In the context of increasing numbers of childhood cancer survivors (CCS), this study aimed to enhance understanding of the biophysical basis for long term chemotherapy induced peripheral neuropathy from different chemotherapy agents in CCS. Detailed cross-sectional neurophysiological examination, using median nerve axonal excitability studies, alongside clinical assessments, in 103 long term CCS (10.5 ± 0.6 years post-treatment). Cisplatin treated CCS (n = 16) demonstrated multiple sensory axonal excitability changes including increased threshold (P < 0.05), alterations in depolarising and hyperpolarising threshold electrotonus (P < 0.05) and reduction in resting and minimum IV slope (P < 0.01). Vincristine treated CCS (n = 73) were comparable to controls, except for prolonged distal motor latency (P = 0.001). No differences were seen in the non-neurotoxic chemotherapy group (n = 14). Abnormalities were more evident in the cisplatin subgroup with greater clinical neuropathy manifestations. Persistent long term changes in axonal biophysical properties vary with different chemotherapy agents, most evident after cisplatin exposure. Longitudinal studies of nerve function during chemotherapy treatment are required to further evaluate these differences and their mechanistic basis. This study provides a unique biophysical perspective for persistent cisplatin related neurotoxicity in children, previously under recognised. [ABSTRACT FROM AUTHOR]

Purpose: Increased cardiovascular disease and second cancer risks among childhood cancer survivors (CCS) makes them and their families important audiences for nutrition intervention. Family meals and home cooking practices have been associated with improved diet and health, but there is a gap in the literature on understanding these behaviors and their motivating values among CCS families. This study qualitatively explores family meal values and behaviors in a sample of CCS parent-child dyads.Methods: This observational and qualitative study recruited a convenience sample of 11 parent-CCS dyads. Data collection included audio and video recording of food preparation events in participant homes, which were analyzed with an inductive coding technique to examine meal-related values in CCS families.Results: Analyses revealed four major categories of meal values. Effort, including time and difficulty, as well as budget, healthfulness, and family preferences emerged as recurrent values impacting meal preparation. These values were impacted by the cancer experience upon diagnosis, during treatment, and into survivorship.Conclusions: A better understanding of CCS family meal planning values, the impact of the cancer experience on these values, and the inclusion of CCS in food preparation reveals potential intervention targets, facilitators, and barriers for future interventions to improve dietary behaviors among CCS. [ABSTRACT FROM AUTHOR]

Purpose: Childhood cancer survivors need regular, risk-adapted, long-term survivor care. This retrospective study describes the proportion of survivors seen for an initial survivor clinic visit within a large pediatric oncology program.Methods: Patients diagnosed with non-central nervous system childhood malignancies from 2007 to 2012 were followed from the time of survivor clinic eligibility (2 years following completion of therapy) through their initial survivor clinic visit or end of study. Demographic, cancer-related, and logistical factors related to clinic attendance were examined using Kaplan-Meier curves and Cox proportional regressions.Results: Eligible survivors were 53.0% male, 51.5% non-Hispanic white, and 30.9% survivors of leukemia. Among the 866 eligible survivors for this study, 610 (70.4%) completed their initial visit. After controlling for sex and time eligible, survivors who received surgery only (aHR 0.04 (0.02, 0.08)) or radiation only (0.24 (0.15, 0.39)) and who had Medicaid (0.77 (0.64, 0.92)) were significantly less likely to have an initial visit as were those of black or other/mixed race and those who lived > 25 mi from the clinic (p < 0.01). Survivors aged 6-11 years or 12-17 years at eligibility were significantly more likely to complete an initial visit as compared to those aged 2-5 years (1.55 (1.24, 1.93) and 1.44 (1.14, 1.83), respectively).Conclusions: Nearly a third of survivors were not seen in a pediatric survivor clinic despite the importance of survivor care. These results identify populations at risk for not pursuing long-term survivorship care.Implications For Cancer Survivors: Failure to transition to pediatric survivor care may lead to lifelong non-engagement and incorrect perceptions about future health. [ABSTRACT FROM AUTHOR]

A population based registry, with the acronym BORISS, was established. It contains all individuals (0-18 years of age at diagnosis) diagnosed with cancer from 1970-01-01 until 2016-12-31 in Southern Sweden. The treatment data has been entered into the registry after confirmation of the diagnosis by the Swedish national cancer registry and updates on vital status from the Swedish population registry. The number of individuals with a pediatric cancer diagnosed during these 46 years are 2928. Of these, 2065 are currently alive and 1882 individuals are 5-year survivors. Data on treatment and malignancy of the 5-year survivors has been collected from medical records and entered into the database. Treatment data contains surgical procedure, target organ of radiation therapy including dose and fractionation, and cytostatic treatment with dose (mg) per body surface area (m2) for all cytostatic agents. Data on individuals receiving stem cell treatment is included. The database is unique in that it is population based, contains all individuals and detailed treatment data on all 5-year survivors after childhood cancer in Southern Sweden since 1970. The database has contributed to several academic theses in the field of late effects after childhood cancer. BORISS also supports the Late Effect Clinic at Skåne University Hospital in Lund, Sweden with treatment details enabling a stratified surveillance. [ABSTRACT FROM AUTHOR]

Objective: To examine the potential mediating role of body image dissatisfaction on the association between treatment-related scarring/disfigurement and psychological distress in adult survivors of childhood cancer.Methods: Participants included 1714 adult survivors of childhood cancer (mean [SD] age at evaluation = 32.4 [8.0] years, time since diagnosis = 24.1 [8.1] years) enrolled in the St. Jude Lifetime Cohort Study. Survivors completed measures of body image, emotional distress, and posttraumatic stress symptoms (PTSS). Body image dissatisfaction (BID) was categorized into 2 groups (cancer-related and general) based on factor analysis. Using causal mediation analysis, we estimated the proportion of psychological distress associated with treatment-related scarring/disfigurement that could be eliminated by resolving BID through a hypothetical intervention.Results: Among survivors with scarring/disfigurement of the head, a sizable proportion of the relative excess of psychological distress could be eliminated if BID was successfully treated (males: [cancer-related BID: depression: 63%; anxiety: 100%; PTSS: 52%]; [general BID: depression: 70%; anxiety: 100%; PTSS: 42%]; females: [cancer-related BID: depression: 20%; anxiety; 36%; PTSS: 23%]; [general BID: depression: 32%; anxiety: 87%; PTSS: 38%]). The mediating effect of BID was less pronounced for the association between scarring/disfigurement of the body and psychological distress for both males and females.Conclusions: Body image dissatisfaction mediates the association treatment-related scarring/disfigurement and psychological distress among adult survivors of childhood cancer, particularly among survivors with scarring/disfigurement of the head and male survivors. Successful treatment of body image dissatisfaction has the potential to eliminate a substantial proportion of psychological distress related to scarring/disfigurement among adult survivors of childhood cancer. [ABSTRACT FROM AUTHOR]

Purpose: Focusing on primary care providers (PCPs) of known childhood cancer survivors, we used a mixed methods approach to understand providers' experiences with the survivorship care plan (SCP), as well as preferences and barriers regarding survivorship care.Methods: The SCP was sent to 202 eligible PCPs of patients attending a regional survivorship clinic. The PCPs then completed quantitative postal surveys. Sixteen PCPs underwent an additional qualitative interview. Provider characteristics were examined as potential predictors of experiences, preferences, and barriers regarding survivorship care. Grounded theory was utilized to analyze the qualitative data.Results: Respondents (n=134) included 55% pediatricians, 23% internists, 20% family practitioners, and 2% obstetricians/gynecologists. Only 8% of PCPs preferred to have primary responsibility for survivorship care; 46% favored a specialized clinic. A minority of PCPs reported that they felt "very comfortable" using the SCP to guide surveillance (31%) or deliver all survivorship care (3%). Endorsed barriers included lack of knowledge/training (74%), not recalling or understanding the contents of the SCP (69%), and uncertainty about who is responsible for providing care (58%). Two distinct themes emerged from the qualitative interviews: a preference not to be responsible for survivorship care, and uncertain utility of the SCP.Conclusions: Our study suggests that PCPs of childhood cancer survivors generally felt uncomfortable using the SCP and providing survivorship care. Even with the availability of the SCP, the biggest barrier was lack of knowledge. Our data suggests that including PCPs in survivorship care will require additional educational opportunities and evaluation of more collaborative models of care delivery. [ABSTRACT FROM AUTHOR]

Background: Data on the status of long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) in Korea is lacking. This study was conducted to evaluate the current status of LTFU care for CCSs and relevant physicians' perspectives., Methods: A nationwide online survey of pediatric hematologists/oncologists in the Republic of Korea was undertaken., Results: Overall, 47 of the 74 board-certified Korean pediatric hematologists/oncologists currently providing pediatric hematology/oncology care participated in the survey (response rate = 63.5%). Forty-five of the 47 respondents provided LTFU care for CCSs five years after the completion of primary cancer treatment. However, some of the 45 respondents provided LTFU care only for CCS with late complications or CCSs who requested LTFU care. Twenty of the 45 respondents oversaw LTFU care for adult CCSs, although pediatric hematologists/oncologists experienced more difficulties managing adult CCSs. Many pediatric hematologists/oncologists did not perform the necessary screening test, although CCSs had risk factors for late complications, mostly because of insurance coverage issues and the lack of Korean LTFU guidelines. Regarding a desirable LTFU care system for CCSs in Korea, 27 of the 46 respondents (58.7%) answered that it is desirable to establish a multidisciplinary CCSs care system in which pediatric hematologists/oncologists and adult physicians cooperate., Conclusion: The LTFU care system for CCS is underdeveloped in the Republic of Korea. It is urgent to establish an LTFU care system to meet the growing needs of Korean CCSs, which should include Korean CCSs care guidelines, provider education plans, the establishment of multidisciplinary care systems, and a supportive national healthcare policy., Competing Interests: The authors have no potential conflicts of interest to disclose., (© 2023 The Korean Academy of Medical Sciences.)

Purpose: Because many survivors do not receive recommended follow-up, we sought to characterize patterns and predictors of survivorship clinic attendance in a population-based sample of childhood cancer survivors.Methods: Using the Connecticut Tumor Registry, we identified all patients diagnosed with cancer at age ≤ 18 years from March 1, 1998 to March 1, 2008, still in follow-up 5 years post-diagnosis, and living <100 miles from Yale. Survivorship clinic attendance, demographics, disease characteristics, and treatment exposures were ascertained. Vital status was confirmed with the National Death Index. The Kaplan-Meier curves and hazard ratios were calculated for survivorship clinic attendance.Results: Four hundred eighty-nine eligible survivors currently 19.1 ± 6.2 years old were diagnosed at a mean age of 9.1 ± 5.8 years with leukemias/lymphomas (47.2 %), central nervous system tumors (16.4 %), sarcomas (11.2 %), thyroid cancers or melanomas (7.8 %), and other solid tumors (17.4 %). The 10-year post-diagnosis clinic attendance probability was 27.8 % (SE = 2.3) overall, and 36.9 % (SE = 4.4) and 40.8 % (SE = 3.8), in patients with radiation and anthracycline exposure, respectively. In adjusted analysis, patients with insurance (HR = 2.90; p < 0.01 for private and HR = 2.05; p = 0.02 for public assistance), treated with anthracyclines (HR = 3.05; p < 0.01), and treated with radiation (HR = 1.90; p < 0.01) were significantly more likely to attend clinic.Conclusions: The majority of childhood cancer survivors in our population-based sample had not attended survivorship clinic, even among those with high-risk exposures. Health care access, as measured by insurance status, was an important predictor of clinic attendance.Implications For Cancer Survivors: More research is needed to clarify the link between insurance status and survivorship care to increase appropriate late effects surveillance in this population. [ABSTRACT FROM AUTHOR]

Objective: Survivors of childhood cancer must contend with a number of medical and psychosocial vulnerabilities after their cancer treatment ends. Interventions have been developed to alleviate or prevent adverse outcomes among this population. This systematic review summarizes the efficacy of psychosocial, health behavior, and neurocognitive interventions for survivors of pediatric cancer. Method: Multiple databases were searched for studies published between January 1970 and June 2013. Studies were coded by 2 raters for methodological quality using the Effective Public Health Practice Project quality assessment tool. Results: Twenty-four interventions were identified (7 psychosocial, 10 health behavior, and 7 neurocognitive). Eleven were controlled trials, of which 7 achieved medium to large effect sizes. Survivor interest, as demonstrated by consent rates, was high for interventions that did not require travel. Conclusions: Interventions using delivery methods varying from traditional counseling to computers achieved moderate to strong efficacy and merit replication. Survivor needs related to transition to adult-oriented health care and school reentry were not addressed by existing interventions. This review also revealed the absence of health behavior interventions for survivors in middle childhood and late adolescence. Intervention formats that are cost-effective and reduce participant burden should be prioritized for further testing. To broaden the reach and appeal of interventions, alternative delivery methods, such as mobile phone software applications, should be evaluated. [ABSTRACT FROM AUTHOR]

• More children diagnosed with cancer during primary school survive into adulthood. • Adult survivors of childhood cancer experience lower educational and occupational attainment. • Educational participation as a social process is poorly understood for children with cancer. • We synthesize recommendations for practice and policy to improve educational participation. • We call for engagement with Life Course principles with implications for research practice. Adult survivors of childhood cancer experience poorer long-term socioeconomic outcomes, yet the influence of educational participation during primary school years is not well understood. This review synthesizes empirical findings from seventy-four quantitative and qualitative peer-reviewed studies, published from 2000-2019 and identified through a search of nine databases. The findings point to the following recommendations to improve policy and practice: provision of teaching and learning away from school; focus on student-centeredness; strengthening home-school-hospital partnerships; facilitation of teacher and peer acceptance; school re-entry support; resources and funding; and advocacy. The findings suggest that a Life Course lens is appropriate to conceptualize the role of educational participation for mitigating long-term impacts of childhood cancer during developmental transitions from childhood to adolescence and adulthood. [ABSTRACT FROM AUTHOR]

Chemotherapy-induced peripheral neuropathy (CIPN), a debilitating side effect of pediatric cancer therapy, can be challenging to diagnose. We estimated the prevalence of newly identified and previously diagnosed CIPN in the regional HEROS Childhood Cancer Survivorship Clinic. From 2016 to 2018, 148 survivors (45.3% female, age 17.1 [SD 7.7] years, 81.8% in ongoing routine oncology follow-up) had their initial survivorship evaluation at an average of 7.4 (SD 6.6) years from diagnosis. Fifty-six survivors (37.8%) had CIPN, of these 46 (82.1%) were newly identified. Our findings demonstrate CIPN may be missed in routine oncology care, and new methods are needed to screen for CIPN., (© 2021 Wiley Periodicals LLC.)

There is limited information addressing the occurrence of esophageal strictures among the growing population of survivors of childhood cancer. Using the Childhood Cancer Survivor Study, we analyzed data from 17,121 5-year survivors and 3400 siblings to determine the prevalence and risk factors for esophageal strictures. Prevalence among survivors was 2.0% (95% confidence interval [CI]: 1.8-2.2%), representing a 7.6-fold increased risk compared to siblings. Factors significantly associated with risk of esophageal stricture included diagnosis of Hodgkin lymphoma, greater chest radiation dose, younger age at cancer diagnosis, platinum chemotherapy, and hematopoietic stem cell transplantation. While uncommon, survivors are at risk for therapy-related esophageal strictures., (© 2021 Wiley Periodicals LLC.)

Background: This retrospective study harnessed an institutional cancer registry to construct a childhood cancer survivorship cohort, integrate electronic health record (EHR) and geospatial data to stratify survivors based on late-effect risk, analyze follow-up care patterns, and determine factors associated with suboptimal follow-up care., Procedure: The survivorship cohort included patients ≤18 years of age reported to the institutional cancer registry between January 1, 1994 and November 30, 2012. International Classification of Diseases for Oncology, third revision (ICD-O-3) coding and treatment exposures facilitated risk stratification of survivors. The EHR was linked to the cancer registry based on medical record number (MRN) to extract clinic visits., Results: Five hundred and ninety pediatric hematology-oncology (PHO) and 275 pediatric neuro-oncology (PNO) survivors were included in the final analytic cohort. Two hundred and eight-two survivors (32.6%) were not seen in any oncology-related subspecialty clinic at Duke 5-7 years after initial diagnosis. Factors associated with follow-up included age (p = .008), diagnosis (p < .001), race/ethnicity (p = .010), late-effect risk strata (p = .001), distance to treatment center (p < .0001), and area deprivation index (ADI) (p = .011). Multivariable logistic modeling attenuated the association for high-risk (OR 1.72; 95% CI 0.805, 3.66) and intermediate-risk (OR 1.23, 95% CI 0.644, 2.36) survivors compared to survivors at low risk of late effects among the PHO cohort. PNO survivors at high risk for late effects were more likely to follow up (adjusted OR 3.66; 95% CI 1.76, 7.61)., Conclusions: Nearly a third of survivors received suboptimal follow-up care. This study provides a reproducible model to integrate cancer registry and EHR data to construct risk-stratified survivorship cohorts to assess follow-up care., (© 2021 Wiley Periodicals LLC.)

In this article, a father and son describe the experience of childhood leukemia treatment and its aftermath with the unique perspective of a parent who is also a pediatric oncologist. An illness that began with an apparently favorable prognosis was transformed by an early relapse, followed by unexpected complications and difficult treatment decisions. Despite unfavorable statistics, the son is a long-term survivor with an overall excellent quality of life, despite several late events and effects. His father, in the meantime, gained insights that now inform his own practice., Competing Interests: Disclosure The authors have nothing to disclose., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: Evidence is not available to guide management of childhood cancer survivors (CCS) at risk for radiation-associated cerebral vascular disease (CVD) and stroke. We propose to use a consensus-based methodology to describe the collective opinion of regional experts for the care of these patients and identify areas of controversy., Procedure: Thirty physicians from the New England region who care for CCS participated in a Delphi panel querying their management approach (imaging, laboratory tests, medications, counseling, referrals) to a CCS treated with cranial radiation formatted as five clinical scenarios (asymptomatic, small- and large-vessel CVD, transient ischemia, stroke) in three rounds of anonymous questionnaires. Consensus defined as ≥90% agreement., Results: Response rate was 100% for all three rounds. Panelists reached consensus on laboratory tests to assess stroke risk factors, stroke risk and prevention counseling, brain imaging to monitor survivors with known CVD, and acute care for stroke symptoms. Only 67% panelists agreed with MRI screening asymptomatic survivors with no history of CVD, 87% endorsed aspirin as stroke prevention for large-vessel CVD and 57% for small-vessel CVD. There was no consensus on specialty referrals. Overall, panelists practicing at large institutions and neurology subspecialists were more likely to advocate for screening, interventions, and referrals., Conclusions: Despite lack of evidence to guide stroke prevention in CCS treated with cranial radiation, a panel of regional physicians reached consensus on managing most clinical scenarios. Controversial areas requiring further study are surveillance imaging for asymptomatic survivors, aspirin for stroke prevention, and indications for specialty referral., (© 2018 Wiley Periodicals, Inc.)

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

The risk of developing skin cancer is elevated among childhood cancer survivors (CCS), particularly among those treated with radiation. This survey study examined the skin cancer surveillance behaviors of 94 CCS. Approximately 48% of CCS had ever conducted skin self-examination (SSE) and 31% had ever received a physician skin examination. Rates of physician skin examination were 2.5 times higher among CCS treated with radiation compared to those without radiation. However, rates of SSEs did not differ based on treatment history. These findings highlight the need to promote skin cancer surveillance as an important aspect of CCS survivorship care., (© 2015 Wiley Periodicals, Inc.)

This study investigates the role that childhood cancer camps continue to play in the lives of adults surviving childhood cancers (ASCCs). Specifically, the purpose of this study is to understand the roles these camps play in enhancing ASCCs' psychosocial and emotional well-being and access to information. Twenty-three ASCCs participated in this study. Illness narratives were used to understand ASCCs' camp experiences. Three themes emerged from the data analysis to reflect ASCCs' experiences: (1) normalcy, (2) meaningful camp experiences, and (3) access to information. Results show that in the years following camp participation, childhood cancer camps continue to play an important role in ASCCs' lives, providing them with ongoing social and emotional support and access to resources.