Purpose We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001) Conclusions Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.

Objective To explore willingness/hesitancy to vaccinate self and children against severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) among caregivers of childhood cancer survivors (CCS). Methods A 19‐question survey was sent to caregivers of CCS and completed between February 25 and April 13, 2021. Logistic regression was used to investigate relationships between willingness/hesitancy to vaccinate (a) self and (b) CCS, and demographic variables, confidence in the government and medical community's responses to coronavirus disease 2019 (COVID‐19), and factors specific to the CCS community (e.g., previous participation in an investigational therapeutic trial). Results Caregivers (6% male) from 130 unique families completed the survey. Mean CCS age at survey was 15 years (SD 6.4). Mean CCS age at diagnosis was 4.3 years (SD 4.3). Mean time from CCS diagnosis to survey completion was 10 years (SD 6.2). Twenty‐one percent of caregivers expressed hesitancy to vaccinate themselves and 29% expressed hesitancy to vaccinate their CCS. Caregivers expressing confidence in the federal government's response to COVID‐19 were six‐fold likelier to express willingness to self‐vaccinate (p < .001) and were three‐fold likelier to express willingness to vaccinate their CCS (p = .011). Qualitative analysis of free‐text responses revealed three general themes, including (a) confidence in science, medicine, and vaccination as a strategy for health promotion, (b) confidence in SARS‐CoV‐2 vaccination and belief that CCS are at greater risk of COVID‐19 complications, and (c) concerns about the swiftness of COVID‐19 vaccine development and insufficient safety/efficacy data in children and CCS. Conclusions Results underscore the need for COVID‐19 vaccination education and outreach, even among families highly engaged with the medical community, and emphasize the importance of updating these families as relevant data emerge from vaccine trials and registries.

Siblings of children with cancer are a psychosocially at-risk group and have unmet needs that are typically not addressed within traditional hospital settings. The current study implemented a community-academic partnership model with SuperSibs-a nationwide, community-based, no-cost program for siblings of children with cancer, powered by Alex's Lemonade Stand Foundation-to evaluate and improve their sibling resources. Method: Researchers and Alex's Lemonade Stand Foundation staff partnered to plan and conduct research with siblings regarding desired support resources, with attention to the acceptability and feasibility of implementation. Siblings (N ϭ 23) provided qualitative data regarding suggestions for new resources and feedback on existing and proposed SuperSibs programs. Qualitative data were analyzed using applied thematic analysis. Results: Siblings emphasize the importance of support that is meaningful, age-appropriate, consistently delivered and that offers autonomy. Siblings recommended revised SuperSibs program initiatives, such as yoga instruction, education for parents and teachers, and game-based interventions. Collaboration throughout the course of the research between researchers and Alex's Lemonade Stand Foundation staff yielded improvements to SuperSibs programming. Conclusion: Community-academic partnerships are useful in conducting impactful research that is directly translatable into community-based support. Recommendations continue to inform resource development and evaluation goals.

Objectives: Use of assisted reproductive technology (ART) may alter the typical course of fetal development. We sought to investigate the association between ART use and childhood cancer subtype. Study design: We surveyed 1701 parents of children with cancer about ART use, demographics, and gestational and perinatal factors. Multivariable logistic regression modeled the association between ART use and childhood cancer subtypes, birthweight and multiple gestation status. Results: Among childhood cancer patients, ART use was highest among children with osteosarcoma (OR=2.81; 95% CI=1.2-6.4; P=0.01). ART use was also elevated among children with hepatoblastoma, and this relationship appeared mediated by low birthweight. No specific type of ART appeared to drive these associations. Low birthweight was itself strongly associated with increased hepatoblastoma risk, even after adjustment for ART use, multiple gestation status, sex, and parental income (P<0.001). Birthweight was higher in patients with germ cell tumors (P=0.02) and with neuroblastoma (P=0.06). Multiple gestation status was associated with neuroblastoma among females (OR=3.6, 95% CI=1.2-10.5, P=0.02), but not among males (OR=0.97, 95% CI=0.27-3.4, P=0.96) (Pinteraction=0.02). Conclusions: Associations between ART use and hepatoblastoma risk may be mediated by birthweight, a strong hepatoblastoma risk factor that was replicated in our study. ART use may also be associated with osteosarcoma independent of birthweight, an association not previously observed in studies limited to cancers diagnosed before adolescence. Evaluating long-term health outcomes in children conceived by ART, throughout adolescence and potentially into adulthood, appears warranted.

Background Caregivers experience financial hardship during a child's cancer treatment and after their child's death. These bereaved caregivers also experience negative psychosocial outcomes following the death of a child, but the relationship between financial hardship and negative psychosocial outcomes is poorly understood in this population. Methods We surveyed self‐selected bereaved caregivers as part of a publicly posted survey through Alex's Lemonade Stand Foundation in order to explore family experiences after losing a child to cancer. The survey contained questions regarding parent psychosocial and financial outcomes following their child's death. Results One‐hundred seventy‐six caregivers completed the survey a median of 7 years after their child's death. The majority were female (91%), non‐Hispanic White (97%), and married or living with a domestic partner (76%). Overall, 31% of caregivers reported that their child's death significantly impacted the financial well‐being of their family, 23% experienced a decrease in income following their child's death, and 14% were still paying medical expenses. Financial hardship that the caregiver attributed to the child's death was associated with feeling lonely and isolated (adjusted relative risk [ARR] = 1.7, 95% CI: 1.1–2.7) and living day to day (ARR = 1.8, 95% CI: 1.3–2.5), even after adjustment for household income and time since child's death. Conclusions Caregivers experience multiple financial hardships following the death of a child to cancer, which endure for years after the child's death. These hardships are associated with negative psychosocial outcomes, demonstrating the need for both financial and psychosocial interventions for caregivers following the death of a child to cancer.

OBJECTIVE To investigate the association between maternal prenatal substance use/abuse and diagnosis of childhood cancer subtypes, including childhood brain tumors. To minimize recall bias, we employed a case-only study design in which all respondents had a child diagnosed with cancer. STUDY DESIGN: We deployed a cross-sectional, case-only survey of parents of children diagnosed with cancer regarding prenatal smoking, drinking, and illicit drug use behaviors (scored on 1-7 Likert scale), demographic, gestational, and perinatal factors. Multivariable logistic regression assessed associations of gestational smoking, alcohol, and illicit drug use with childhood cancer subtypes, adjusting for child sex, race/ethnicity, birthweight, and household income. RESULTS 3145 families completed the survey, including 232 with astrocytoma (grades I-IV, including DIPG) and 210 with an embryonal CNS tumor (medulloblastoma, AT/RT, PNET). A minority reported ever smoking tobacco products during pregnancy (Likert score ≥ 2; 14%), ever consuming illicit drugs during pregnancy (Likert score ≥ 2; 4%), or drinking more than a moderate amount of alcohol during pregnancy (Likert score ≥ 5; 2%). Prenatal smoking was associated with lower odds of rhabdomyosarcoma (OR=0.48, P=0.023) and moderately elevated odds of non-Hodgkin lymphoma (OR = 1.52, P=0.098) and AML (OR = 1.52, P = 0.083). Moderate to heavy alcohol consumption was unassociated with cancer subtypes. Prenatal illicit drug use was associated with increased odds of retinoblastoma (OR = 5.03, 95% CI = 1.73-14.7, P = 0.003) and CNS embryonal tumors (OR = 2.56, 95% CI = 1.32-4.99, P = 0.006), with similar effects across subgroups of medulloblastoma, AT/RT, and supratentorial PNETs. CONCLUSIONS Associations between self-reported use of alcohol, tobacco, and illicit drugs during pregnancy and risk of childhood cancer is often biased by differential misreporting among parents of affected children. Consistent with prior reports, we observe elevated odds of hematologic malignancies in association with gestational tobacco smoke exposure and novel association between maternal illicit drug use during pregnancy and elevated odds of retinoblastoma and CNS embryonal tumors.

Objective: We sought to explore the variation in emotional responses and identify clusters of emotional patterns associated with sociodemographic, clinical, and familial factors. Methods: A large-scale survey with questions on demographics, experiences, and emotions at the time of diagnosis was sent to childhood cancer caregivers and completed between August 2012 and April 2019. Dimensionality reduction and statistical tests for independence were used to investigate relationships between sociodemographic, clinical, and psychosocial factors and 32 representative emotions. Results: Data from 3142 respondents were analyzed. Through principal components analysis and t-distributed stochastic neighbor embedding analysis, three clusters of emotional responses were identified, captured 44%, 20% and 36% of respondents, respectively. Hallmark emotions within each cluster were "anger and grief" (Cluster 1), "pessimism, relief, impatience, insecurity, discouragement, and calm" (Cluster 2), and "hope" (Cluster 3). Cluster membership was associated with differences in parental factors, such as educational attainment, family income, and biological parent status, as well as child-specific factors, including age at diagnosis and cancer type. Conclusions: The study revealed substantial heterogeneity in emotional responses to a child's cancer diagnosis than previously recognized, with differences linked to both caregiver and child-related factors. These findings underscore the importance of developing responsive and effective programs to improve targeted support for caregivers from the time of diagnosis throughout a family's childhood cancer journey.

Objectives To investigate the association between assisted reproductive technology (ART) use and childhood cancer subtype. Study Design We deployed a cross‐sectional survey of 1701 parents of children with cancer about their ART use, demographics, and gestational and perinatal factors. Multivariable logistic regression modeled the association between ART use, birthweight and multiple gestation status with childhood cancer, by subtype. Results ART use was highest among children with osteosarcoma relative to children with other cancer types, and this association was statistically significant in multivariable models (OR = 4.4; 95% CI = 1.7–11.3; p = 0.0020). ART use was also elevated among children with hepatoblastoma, but this relationship appeared to be due to the strong associations between ART use and lower birthweight in our sample. No specific ART modality appeared to drive these associations. In univariate models, multiple gestation was associated with a 2.7‐fold increased odds of hepatoblastoma (OR = 2.71; 95% CI = 1.14–6.42; p = 0.02) and a 1.6‐fold increased odds of neuroblastoma (OR = 1.62; 95% CI = 1.03–2.54; p = 0.03), but these associations were not retained in multivariable models. Conclusions Associations between ART use and hepatoblastoma risk may be attributable to birthweight, a known hepatoblastoma risk factor. ART use may also be associated with osteosarcoma, independent of birthweight, an association not previously observed in studies limited to cancers diagnosed before adolescence. Evaluating long‐term health outcomes in children conceived by ART, throughout adolescence and potentially into adulthood, appears warranted.