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Purpose of Review This study aims to describe what is currently known about how children with cancer have been affected by the COVID-19 pandemic, including morbidity and mortality, interruptions in cancer care and delays in diagnosis, and psychosocial effects. Here we summarize the literature on how this patient population has fared during the pandemic, reviewing multiple smaller reports along with two large registries. Recent Findings Although children with cancer generally have better outcomes with COVID-19 infection than adults with cancer, their risks of hospitalization, ICU admission, and death are greatly increased compared to the general pediatric population. There are socioeconomic and ethnic disparities present in these effects. Summary Children with cancer experience significant risks from the COVID-19 pandemic. It has yet to be seen how delays and interruptions of cancer treatment and direct organ toxicities caused by the virus itself may affect long-term outcomes in these patients.

There is limited information regarding COVID-19 in long-term blood or marrow transplant (BMT) survivors. We leveraged the BMT Survivor Study (BMTSS) to address this gap. BMTSS included patients who underwent BMT at one of three US sites between 1974 and 2014 and survived ≥2 years after BMT. A sibling cohort serves as a non-BMT comparison group. Participants (2,430 BMT survivors; 780 non-BMT participants) completed the BMTSS survey between 10/2020 and 11/2021 about COVID-19 testing, risk mitigation behaviors, morbidity, and healthcare utilization. Median age at BMT was 46 years (range: 0-78 years) and median follow up since BMT was 14 years (6-46 years); 76% were non-Hispanic white, 54% had received allogeneic BMT. The risk of COVID-19 infection was comparable for BMT survivors vs non-BMT participants (15-month cumulative incidence: 6.5% vs. 8.1%; adjusted odd ratio [aOR]=0.93, 95%CI=0.65-1.33, p=0.68). Among survivors, being unemployed (aOR=1.90, 95%CI=1.12-3.23, p=0.02; reference: retired) increased the odds of infection; always wearing a mask in public was protective (aOR=0.49, 95%CI=0.31-0.77. p=0.002; reference: not always masking). When compared with COVID positive non-BMT participants, COVID positive BMT survivors had higher odds of hospitalization (aOR=2.23, 95%CI=0.99-5.05, p=0.05); however, the odds of emergency department visits were comparable (aOR=1.60, 95%CI=0.71-3.58, p=0.25). COVID-19 infection status did not increase the odds of hospitalization among BMT survivors (aOR=1.32, 95%CI=0.89-1.95, p=0.17, but did increase the odds of ED visits (aOR=2.63, 95%CI=1.74-3.98, p=

Children with heart disease often experience symptoms and medically intense end-of-life care. Our study explored bereaved parents' perceptions of a "good death" via a mail survey to 128 parents of children with heart disease who died in two centers. Parental perceptions of end-of-life circumstances were assessed by closed-ended questions including level of agreement with the question: "would you say your child experienced a good death?" and open-ended comments were contributed. Medical therapies at end-of-life and mode of death were retrieved through chart review. Of 50 responding parents, 44 (response rate: 34%) responded to the "good death" question; 16 (36%) agreed strongly, 15 (34%) agreed somewhat, and 30% disagreed (somewhat: 7, 16%; strongly: 6, 14%). Half the children were on mechanical support and 84% intubated at death. Of children with cardiopulmonary resuscitation (CPR) at end-of-life, 71% of parents disagreed with the "good death" question compared with 22% of parents whose child died following discontinuation of life-sustaining therapy or comfort measures (OR 9.1, 95% CI 1.3, 48.9, p

PURPOSE The Pediatric Oncology COVID-19 Case Report registry supplies pediatric oncologists with data surrounding the clinical course and outcomes in children with cancer and SARS-CoV-2. METHODS This observational study captured clinical and sociodemographic characteristics for children (≤ 21 years) receiving cancer therapy and infected with SARS-CoV-2 from the pandemic onset through February 19, 2021. The demographic and clinical characteristics of the cohort were compared with population-level pediatric oncology data (SEER). Multivariable binomial regression models evaluated patient characteristics associated with hospitalization, intensive care unit (ICU) admission, and changes in cancer therapy. RESULTS Ninety-four institutions contributed details on 917 children with cancer and SARS-CoV-2. Median age at SARS-CoV-2 infection was 11 years (range, 0-21 years). Compared with SEER, there was an over-representation of Hispanics (43.6% v 29.7%, P < .01), publicly insured (59.3% v 33.5%, P < .01), and patients with hematologic malignancies (65.8% v 38.3%, P < .01) in our cohort. The majority (64.1%) were symptomatic; 31.2% were hospitalized, 10.9% required respiratory support, 9.2% were admitted to the ICU, and 1.6% died because of SARS-CoV-2. Cancer therapy was modified in 44.9%. Hispanic ethnicity was associated with changes in cancer-directed therapy (adjusted risk ratio [aRR] = 1.3; 95% CI, 1.1 to 1.6]). Presence of comorbidities was associated with hospitalization (aRR = 1.3; 95% CI, 1.1 to 1.6) and ICU admission (aRR = 2.3; 95% CI, 1.5 to 3.6). Hematologic malignancies were associated with hospitalization (aRR = 1.6; 95% CI, 1.3 to 2.1). CONCLUSION These findings provide critical information for decision making among pediatric oncologists, including inpatient versus outpatient management, cancer therapy modifications, consideration of monoclonal antibody therapy, and counseling families on infection risks in the setting of the SARS-CoV-2 pandemic. The over-representation of Hispanic and publicly insured patients in this national cohort suggests disparities that require attention.

Background Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. Methods This was a retrospective study of 233 children (0-19 years) who received cancer-directed therapy at Children's of Alabama and died from 2010 through 2019. Rates and disparities in palliative care utilization and the association between palliative care and intense EOL care, death location, and hospice were examined. Results The median death age was 11 years; 62% were non-Hispanic White. Forty-one percent had a non-central nervous system (CNS) solid tumor. Fifty-eight percent received palliative care, and 36% received early palliative care (≥30 days before death). Children without relapsed/refractory disease were less likely to receive palliative care than those who had relapsed/refractory disease (adjusted odds ratio [aOR], 0.2; 95% confidence interval [CI], 0.1-0.7). Children with CNS tumors and hematologic malignancies were less likely to have early palliative care (aOR for CNS tumors, 0.4; 95% CI, 0.2-0.7; aOR for hematologic malignancies, 0.3; 95% CI, 0.2-0.7) than children with non-CNS solid tumors. Late palliative care (vs none) was associated with more medically intense care (aOR, 3.3; 95% CI, 1.4-7.8) and hospital death (aOR, 4.8; 95% CI, 1.9-11.6). Early palliative care (vs none) was associated with more hospice enrollment (aOR, 3.4; 95% CI, 1.5-7.6) but not medically intense care (aOR, 1.3; 95% CI, 0.6-2.9) or hospital death (aOR, 1.8; 95% CI, 0.8-3.7). Conclusions Fifty-eight percent of children dying of cancer in Alabama receive palliative care, but EOL care varies with the receipt and timing (early vs late) of palliative care. Whether this variation reflects differences in child and family preferences or systemic factors (eg, hospice access) remains unknown.

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.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.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.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.

Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR).We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM's importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement.Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg,2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation).This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.

Background: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. Objective: To describe caregivers of AYA cancer decedents perspectives’ on EOL care quality related to EOL care communication. Design: Cross-sectional observational study. Setting/Subjects: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Measurements: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Results: Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Conclusions: Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.

There is a growing population of children with complex chronic conditions (CCCs) whose caregivers would benefit from palliative care (PC). However, little is known about caregivers' PC awareness. We aimed to describe PC awareness among caregivers of children with CCCs and identify factors associated with lack of PC awareness. We used the National Cancer Institute's national Health Information National Trends Survey 2018 data to determine the percentage of caregivers of ill children who have PC awareness. After matching, caregiver PC awareness was compared with that of (1) the general survey population, (2) other caregivers, and (3) caregivers not caring for children. We used multivariable regression to determine factors associated with lack of PC awareness. Of 131 caregivers, 60% had "never heard of" PC. Caregivers of children were no more likely to have heard of PC than the general survey population (P = .76), noncaregivers (P = .97), or caregivers of nonchildren (P = .13). Caregivers younger than 40 years and without a college degree were less likely to have PC awareness than their peers. Most caregivers of ill children have no PC awareness, with no more PC awareness than the general population. Nurses caring for children with CCCs can help educate families and other health care team members about PC.

Context Most of the 20,000 U.S. children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand location of death preferences for children and their families. Objective To better understand location of death preferences in North America, we reviewed the literature to examine the evidence for and against home death in seriously ill children (0–18 years). Methods We searched English articles in PubMed, PsycINFO, and Embase published during 2000–2018 for articles related to parental, child/adolescent, and provider preference for death location and articles that correlated death location with bereavement or quality of life outcomes. Results The search results (n = 877 articles and n = 58 abstracts of interest) were reviewed, and 34 relevant articles were identified. Parent, child, and provider preferences, bereavement outcomes, and associated factors all point to some preference for home death. These findings should be interpreted with several caveats: 1) many studies are small and prone to selection bias, 2) not all families prefer home death and some that do are not able to achieve home death due to inadequate home support, 3) studies of bereavement outcomes are lacking. Conclusion Adequate resources are needed to ensure children can die in their chosen location—be that home, hospital, or free-standing hospice. This review highlights research areas needed to better understand death location preference and programs and policies that will support home death for those that desire it.

Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization.We used MarketScan - a nationally representative dataset with Medicaid and commercial claims to conduct a retrospective observational study of children with cancer who died between 2011 and 2017 at age ≤21 years. We examined rates of (a) home death, (b) hospice utilization, (c) and medically intense interventions in the last 30 days (e.g., intubation).Of the 1492 children in the cohort, 44% had Medicaid and 56% commercial insurance; 71% carried a solid tumor diagnosis, and 37% were between the ages of 15 and 21 years at the time of death. Forty percent died at home; children with Medicaid were less likely to die at home (relative risk [RR] = 0.82, 95% confidence interval [CI]: 0.73-0.92; reference: commercial). Forty-five percent enrolled in hospice, for a median of 2 days. Hospice enrollment rates did not vary with insurance. However, children with Medicaid spent less time enrolled (incidence rate ratio [IRR] = 0.22, 95% CI: 0.17-0.27). Among children with Medicaid, Black children were less likely to die at home (RR = 0.69, 95% CI: 0.52-0.92) and enroll on hospice (RR = 0.71, 95% CI: 0.55-0.91) than non-Hispanic White children. Medically intense interventions did not vary with insurance or race.Only 40% of children with cancer die at home, and the duration of hospice enrollment is short. EOL care varies significantly with insurance. It is imperative that we determine if these patterns and disparities represent EOL preferences, provider biases, or differences in quality or availability of hospice.

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

Context Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty. Objectives This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress. Methods Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score. Results The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone. Conclusions Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes.

Key Points Question What symptoms do pediatric patients receiving palliative care experience, and how frequent and severe are the symptoms, according to parent report? Findings In this cross-sectional analysis of 501 pediatric patients receiving palliative care, at baseline, parents reported a mean (SD) of 6.7 (3.4) symptoms per patient; although older patients had more symptoms and higher symptom scores, variation across disease categories was relatively minor. Patients in the upper 10th percentile of symptom frequency and severity scores had a median of 12 symptoms. Meaning This study suggests that assessment and management of polysymptomatology is a critical aspect of pediatric palliative care., Importance Pediatric palliative care treats patients with a wide variety of advanced illness conditions, often with substantial levels of pain and other symptoms. Clinical and research advancements regarding symptom management for these patients are hampered by the scarcity of data on symptoms as well as an overreliance on clinician report. Objective To provide a detailed description of the symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure. Design, Setting, and Participants Baseline data for this cross-sectional analysis were collected between April 10, 2017, and February 5, 2020, from pediatric palliative care programs in 7 children’s hospitals located in Akron, Ohio; Boston, Massachusetts; Birmingham, Alabama; Houston, Texas; Minneapolis, Minnesota; Philadelphia, Pennsylvania; and Seattle, Washington. Data were collected in the hospital, outpatient, and home setting from patients 30 years of age or younger who were receiving pediatric palliative care at 1 of the study sites. Exposures Analyses were stratified by patients’ demographic characteristics, including age, and by whether the patients had received a diagnosis of any of 10 non–mutually exclusive complex chronic condition categories. Main Outcomes and Measures Twenty symptoms measured via the modified Memorial Symptom Assessment Scale, which scores the frequency and severity of any symptom that is present and provides a total symptom score. Results Among the first 501 patients enrolled, the median age was 4.1 years (interquartile range, 0.8-12.9 years), 267 (53.3%) were male, and 356 (71.1%) were White. The most prevalent complex chronic conditions included gastrointestinal (357 [71.3%]), neurologic (289 [57.7%]), and cardiovascular (310 [61.9%]) conditions; 438 patients (87.4%) were technology dependent. Parents reported a mean (SD) of 6.7 (3.4) symptoms per patient and a median of 7 symptoms (interquartile range, 4-9 symptoms). A total of 367 patients (73.3%) had 5 or more symptoms. The 5 most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Although older patients were reported by parents as having experienced more symptoms and having higher total symptom scores, variation across condition categories was relatively minor. Patients in the upper 10th percentile of total symptom scores had a median of 12.0 symptoms (interquartile range, 11-13). Conclusions and Relevance In this cross-sectional study, most children receiving palliative care were experiencing polysymptomatology. An important subgroup of patients frequently experienced numerous severe symptoms. Assessment and management of patients with polysymptomatology are critical aspects of pediatric palliative care., This cross-sectional analysis describes symptoms among patients receiving pediatric palliative care based on parental report via a validated, structured symptom assessment measure.

Background Ewing sarcoma (EWS) and osteosarcoma (OS) require multidisciplinary treatment. Care at specialized cancer centers (SCC: Children's Oncology Group affiliated and/or National Cancer Institute-designated cancer center) has been found to improve outcomes in patients with leukemia, but studies have not considered location of care and outcomes in EWS and OS patients, an ideal group to evaluate given their specialized multidisciplinary treatment needs. Methods Patients hospitalized with primary EWS and OS (2000-2014) were identified using the California Cancer Registry linked with hospitalization data. Patients were divided into age groups (0-18, 19-39, ≥40 years), and classified on whether they received all versus part/none of their inpatient treatment at a SCC within 1 year of diagnosis. Multivariable Cox proportional hazards regression identified factors associated with survival. Results There were 531 ES and 959 OS patients. Five-year overall survival was better for patients with EWS (all: 63% vs. part/none: 42%) and OS (all: 64% vs. part/none: 47%) who received all of their treatment at a SCC. After adjusting for sociodemographic and clinical factors, receiving all inpatient cancer treatment at a SCC was associated with superior overall survival (EWS HR: 0.49, CI 0.37-0.67; OS HR: 0.78, CI 0.63-0.97). Conclusion Our results suggest that treatment for EWS and OS at a SCC is associated with significantly improved survival even after adjustment for known prognostic factors. The superior survival among those treated at SCCs may be due to having greater access to clinical trials and services at SCCs.

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

Background The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. Methods The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. Results The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. Conclusions Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. Lay summary Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).

During the Spring 2020 COVID surge, a team primarily composed of SOF medics coalesces in New York City, rapidly establishes a field hospital within a large academic teaching hospital, then transitions to step-down and ICU care as institutional needs evolve. Empowered to work as RNs, by emergency decree, the SOF medics, remarkable performance supports the need to define a novel role within the civilian healthcare system for these valuable, highly experienced, and underused providers.

Background End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. Methods This study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer ≥6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). Results The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. Conclusions This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions.

Background Studies of adolescent and young adult (AYA) oncology end-of-life care utilization are critical because cancer is the leading cause of nonaccidental AYA death and end-of-life care contributes significantly to health care expenditures. This study was designed to determine the quantity of and disparities in inpatient utilization in the last year of life of AYAs with cancer. Methods The California Office of Statewide Health Planning and Development administrative discharge database, linked to death certificates, was used to perform a population-based analysis of cancer patients aged 15 to 39 years who died in 2000-2011. The number of hospital days and the inpatient costs were determined for each patient in the last year of his or her life, as were clinical and sociodemographic factors associated with high inpatient utilization. Admission patterns as death approached were also evaluated. Results The 12,883 patients were admitted for 40 days on average in the last year of life, and this cost $151,072 per patient in inpatient costs. As death approached, the admission rates and the percentage of all admissions occurring at nonspecialty centers increased. Five percent of patients used 20% of bed days in the last year (high utilizers). Factors associated with high utilization included younger age (15-30 years), Hispanic ethnicity, non-health maintenance organization insurance, and hematologic malignancies. Conclusions AYA oncology decedents were admitted for 40 days in their last year of life. Subgroups with high utilization had distinct sociodemographic and clinical characteristics, and nonspecialty center admissions increased as death approached. This demonstrates the need for palliative care at nonspecialty centers. Future studies need to determine whether these patterns are goal-concurrent, include high utilizers, and monitor the effects of health care reform. Cancer 2018;124:1819-27. © 2018 American Cancer Society.

BACKGROUND Private health insurance is associated with improved outcomes in patients with cancer. However, to the authors' knowledge, little is known regarding the impact of the Patient Protection and Affordable Care Act Dependent Coverage Expansion (ACA-DCE), which extended private insurance to young adults (to age 26 years) beginning in 2010, on the insurance status of young adults with cancer. METHODS The current study was a retrospective, population-based analysis of hospitalized young adult oncology patients (aged 22-30 years) in California during 2006 through 2014 (11,062 patients). Multivariable regression analyses examined factors associated with having private insurance. Results were presented as adjusted odds ratios and 95% confidence intervals. A difference-in-difference analysis examined the influence of the ACA-DCE on insurance coverage by race/ethnicity and federal poverty level. RESULTS Multivariable regression demonstrated that patients of black and Hispanic race/ethnicity were less likely to have private insurance before and after the ACA-DCE, compared with white patients. Younger age (22-25 years) was associated with having private insurance after implementation of the ACA-DCE (odds ratio, 1.20; 95% confidence interval, 1.06-1.35). In the difference-in-difference analysis, private insurance increased among white patients aged 22 to 25 years who were living in medium-income (2006-2009: 64.6% vs 2011-2014: 69.1%; P = .003) and high-income (80.4% vs 82%; P = .043) zip codes and among Asians aged 22 to 25 years living in high-income zip codes (73.2 vs 85.7%; P = .022). Private insurance decreased for all Hispanic patients aged 22 to 25 years between the 2 time periods. CONCLUSIONS The ACA-DCE provision increased insurance coverage, but not among all patients. Private insurance increased for white and Asian patients in higher income neighborhoods, potentially widening social disparities in private insurance coverage among young adults with cancer. Cancer 2017. © 2017 American Cancer Society.

Purpose: Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However, the intensity of end-of-life care for AYA decedents with cancer—especially the effect of care received at specialty versus nonspecialty centers—remains understudied. Methods: We conducted a retrospective, population-based analysis with the California administrative discharge database that is linked to death certificates. The cohort included Californians age 15 to 39 years who died between 2000 and 2011 with cancer. Intense end-of-life interventions included readmission, admission to an intensive care unit, intubation in the last month of life, and in-hospital death. Specialty centers were defined as Children’s Oncology Group centers and National Cancer Institute–designated comprehensive cancer centers. Results: Of the 12,938 AYA cancer decedents, 59% received at least one intense end-of-life care intervention, and 30% received two or more. Patients treated at nonspecialty centers were more likely than those at specialty-care centers to receive two or more intense interventions (odds ratio [OR], 1.46; 95% CI, 1.32 to 1.62). Sociodemographic and clinical factors associated with two or more intense interventions included minority race/ethnicity (Black [OR, 1.35, 95% CI, 1.17 to 1.56]; Hispanic [OR, 1.24; 95% CI, 1.12 to 1.36]; non-Hispanic white: reference), younger age (15 to 21 years [OR, 1.36; 95% CI, 1.19 to 1.56; 22 to 29 years [OR,1.26; 95% CI,1.14 to 1.39]; ≥ 30 years: reference), and hematologic malignancies (OR, 1.53; 95% CI, 1.41 to 1.66; solid tumors: reference). Conclusion: Thirty percent of AYA cancer decedents received two or more high-intensity end-of-life interventions. In addition to sociodemographic and clinical characteristics, hospitalization in a nonspecialty center was associated with high-intensity end-of-life care. Additional research is needed to determine if these disparities are consistent with patient preference.

BACKGROUND Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. METHODS Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. RESULTS Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged

BACKGROUND Adolescents and young adults (AYAs) ages 15 to 39 years with cancer continue to experience disparate survival outcomes compared with their younger and older counterparts. This may be caused in part by differential access to specialized cancer centers (SCCs), because treatment at SCCs has been associated with improved overall survival. The authors examined social and clinical factors associated with AYA use of SCCs (defined as Children's Oncology Group-designated or National Cancer Institute-designated centers). METHODS A retrospective, population-based analysis was performed on all hospital admissions of AYA oncology patients in California during 1991 through 2014 (n = 127,250) using the Office of Statewide Health Planning and Development database. Multivariable logistic regression analyses examined the contribution of social and clinical factors on always receiving care from an SCC (vs sometimes or never). Results are presented as adjusted odds ratios (ORs) and 95% confidence intervals (CIs). RESULTS Over the past 20 years, the percentage of patients always receiving inpatient care at an SCC increased over time (from 27% in 1991 to 43% in 2014). In multivariable regression analyses, AYA patients were less likely to always receive care from an SCC if they had public insurance (OR, 0.64; 95% CI, 0.62-0.66), were uninsured (OR, 0.51; 95% CI, 0.46-0.56), were Hispanic (OR, 0.88; 95% CI, 0.85-0.91), lived > 5 miles from an SCC, or had a diagnosis other than leukemia and central nervous system tumors. CONCLUSIONS Receiving care at an SCC was influenced by insurance, race/ethnicity, geography, and tumor type. Identifying the barriers associated with decreased SCC use is an important first step toward improving outcomes in AYA oncology patients. Cancer 2017;123:2516–23. © 2017 American Cancer Society.

Background: People with sickle cell disease (SCD) have a life expectancy of

BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having ≥2 intensity markers (including hospital death). RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had ≥2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and ≥2 intensity markers. Hispanic and “other” race and/or ethnicity were associated with hospital death and ≥2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and ≥2 intensity markers. CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.

Background Adolescent girls involved with the juvenile justice system have higher rates of sexually transmitted infections and pregnancy than their nondetained peers. Although they may receive reproductive health care while detained, following clinician recommendations and accessing services in the community can be challenging. Objectives This study aimed to determine the barriers this population faces 1) accessing reproductive health care and 2) following the recommendations they receive when they are in the community. Methods Adolescent girls at a juvenile detention facility completed online surveys about their demographics and sexual health behaviors. A subsequent semistructured interview assessed their experiences with reproductive health care services. Results Twenty-seven girls aged 14 to 19 were interviewed. The majority (86%) self-reported as Latina or Hispanic. The average age of sexual debut was 13.8 years. The major interview themes were 1) personal priorities and motivations affect decision making, 2) powerful external voices influence reproductive health choices, 3) accessing services “on the run” is particularly challenging, and 4) detention represents an opportunity for intervention and change. Conclusion Adolescent girls who are detained within the juvenile justice system face reproductive health challenges that vary with their life circumstances. They frequently have priorities, external voices, and situations that influence their decisions. Clinicians who care for these young women are in a unique position to address their health needs. Eliciting girls' goals, beliefs, and influences through motivational interviewing, as well as developing targeted interventions based on their unique experiences, may be particularly helpful for this population.

10558 Background: The National Quality Forum has endorsed hospice care as a metric of high quality end-of-life (EOL) care for adults with cancer. Specific hospice-related quality metrics include hospice enrollment, hospice enrollment for ≥3d, and death outside of the acute care setting. These metrics have been examined extensively in adults and disparities related to a number of clinical and sociodemographic factors, including insurance, have been identified. However, for children with cancer, hospice utilization data is lacking. We addressed this gap by examining location of death and hospice utilization at EOL for children with cancer and determining whether these metrics varied with insurance status. Methods: We used national insurance claims data (Truven) to conduct a population-based analysis of patients with cancer who died between 2011 and 2017 at age 0-21y. The dataset was queried for hospice claims, inpatient claims, and location of death. The association between insurance (private vs. Medicaid) and 1) location of death, 2) hospice enrollment, and 3) days between first hospice claim and death was examined using multivariable regression analysis, adjusting for age at death, gender, and cancer diagnosis (hematologic malignancies vs. solid tumor). Results: A total of 1,492 children died at a mean age of 11y (SD: 6y); 56% were privately-insured, 56% were male, and 30% had hematologic malignancies. Overall, 58% died in the hospital (privately-insured: 54% vs. Medicaid: 63%). Forty-five percent enrolled in hospice (privately-insured: 46% vs. Medicaid: 43%) with 2% returning to the hospital to die after enrolling in hospice. The average time between first hospice claim and death was 3d (privately-insured: 10d vs. Medicaid: 2d, p = < 0.001). When compared to privately-insured children, children on Medicaid had similar likelihood of hospice enrollment (RR = 1.0, 95%Cl = 0.6-1.8). However, children on Medicaid were more likely to die in the hospital (RR = 1.3, 95%CI = 1.1-1.4) and have fewer days between hospice enrollment and death if enrolled in hospice (IRR: 0.5, 95%CI = 0.3-0.8). Conclusions: In this first study to examine national hospice utilization in children with cancer, care varies significantly with insurance status. Children on Medicaid are more likely to die in the hospital and have shorter hospice enrollment duration than children with private insurance. Whether this variation represents EOL care preferences, provider biases, differences in quality and availability of hospice or home care to different insurers, or other barriers needs to be examined.

Purpose Intensity of end-of-life care receives much attention in oncology because of concerns that high-intensity care is inconsistent with patient goals, leads to worse caregiver outcomes, and is expensive. Little is known about such care in those undergoing allogeneic hematopoietic cell transplantation (HCT), a population at high risk for morbidity and mortality. Patients and Methods We conducted a population-based analysis of patients who died between 2000 and 2013, within 1 year of undergoing an inpatient allogeneic HCT using California administrative data. Previously validated markers of intensity were examined and included: hospital death, intensive care unit (ICU) admission, and procedures such as intubation and cardiopulmonary resuscitation at end of life. Multivariable logistic regression models determined clinical and sociodemographic factors associated with: hospital death, a medically intense intervention (ICU admission, cardiopulmonary resuscitation, hemodialysis, intubation), and ≥ two intensity markers. Results Of the 2,135 patients in the study population, 377 were pediatric patients (age ≤ 21 years), 461 were young adults (age 22 to 39 years), and 1,297 were adults (age ≥ 40 years). The most common intensity markers were: hospital death (83%), ICU admission (49%), and intubation (45%). Medical intensity varied according to age, underlying diagnosis, and presence of comorbidities at time of HCT. Patients with higher-intensity end-of-life care included patients age 15 to 21 years and 30 to 59 years, patients with acute lymphoblastic leukemia, and those with comorbidities at time of HCT. Conclusion Patients dying within 1 year of inpatient allogeneic HCT are receiving medically intense end-of-life care with variations related to age, underlying diagnosis, and presence of comorbidities at time of HCT. Future studies need to determine if these patterns are consistent with patient and family goals.

Subcutaneous panniculitis-like T-cell lymphoma (SPTCL) and primary cutaneous gamma delta T-cell lymphoma (PCGD-TCL) were initially both classified as subcutaneous panniculitis-like T-cell lymphoma. In 2008, SPTCL with alpha-beta T-cell receptor subtype was separated from primary cutaneous gamma delta T-cell lymphomas (PCGD-TCL). We report four pediatric cases that demonstrate the heterogeneity of each disease and show that PCGD-TCL in children can have an indolent course, whereas SPTCL can behave aggressively. Three patients had spontaneous, durable remissions without treatment, whereas the one patient with disease progression was treated successfully. Watchful waiting may thus be appropriate for initial management of children.

BACKGROUND: Many adult patients with cancer who know they are dying choose less intense care; additionally, high-intensity care is associated with worse caregiver outcomes. Little is known about intensity of end-of-life care in children with cancer. METHODS: By using the California Office of Statewide Health Planning and Development administrative database, we performed a population-based analysis of patients with cancer aged 0 to 21 who died between 2000 and 2011. Rates of and sociodemographic and clinical factors associated with previously-defined end-of-life intensity indicators were determined. The intensity indicators included an intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis) within 30 days of death, intravenous chemotherapy within 14 days of death, and hospital death. RESULTS: The 3732 patients were 34% non-Hispanic white, and 41% had hematologic malignancies. The most prevalent intensity indicators were hospital death (63%) and ICU admission (20%). Sixty-five percent had ≥1 intensity indicator, 23% ≥2, and 22% ≥1 intense medical intervention. There was a bimodal association between age and intensity: ages CONCLUSIONS: Nearly two-thirds of children who died of cancer experienced intense end-of-life care. Further research needs to determine if these rates and disparities are consistent with patient and/or family goals.

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

Private health insurance is associated with improved outcomes in patients with cancer. However, to the authors' knowledge, little is known regarding the impact of the Patient Protection and Affordable Care Act Dependent Coverage Expansion (ACA-DCE), which extended private insurance to young adults (to age 26 years) beginning in 2010, on the insurance status of young adults with cancer.The current study was a retrospective, population-based analysis of hospitalized young adult oncology patients (aged 22-30 years) in California during 2006 through 2014 (11,062 patients). Multivariable regression analyses examined factors associated with having private insurance. Results were presented as adjusted odds ratios and 95% confidence intervals. A difference-in-difference analysis examined the influence of the ACA-DCE on insurance coverage by race/ethnicity and federal poverty level.Multivariable regression demonstrated that patients of black and Hispanic race/ethnicity were less likely to have private insurance before and after the ACA-DCE, compared with white patients. Younger age (22-25 years) was associated with having private insurance after implementation of the ACA-DCE (odds ratio, 1.20; 95% confidence interval, 1.06-1.35). In the difference-in-difference analysis, private insurance increased among white patients aged 22 to 25 years who were living in medium-income (2006-2009: 64.6% vs 2011-2014: 69.1%; P = .003) and high-income (80.4% vs 82%; P = .043) zip codes and among Asians aged 22 to 25 years living in high-income zip codes (73.2 vs 85.7%; P = .022). Private insurance decreased for all Hispanic patients aged 22 to 25 years between the 2 time periods.The ACA-DCE provision increased insurance coverage, but not among all patients. Private insurance increased for white and Asian patients in higher income neighborhoods, potentially widening social disparities in private insurance coverage among young adults with cancer. Cancer 2018;124:110-7. © 2017 American Cancer Society.

Objectives To describe the needs and formal assessment of family caregivers and ways to intervene to alleviate distress and enhance caregiving skills in the setting of adult and pediatric leukemia. Data Sources Literature review, clinical practice observations and experiences. Conclusion While rapid treatment advances in leukemia are a welcome development, the reliance on complex care delivered by family members across settings continues to grow and, concomitantly, so does the risk of mental, physical, and economic burden. Implications for Nursing Practice Oncology nurses and other clinicians should systematically incorporate screening and assessment services so that educational and referral needs are identified and intervened upon.

Adolescents and young adults (AYAs) ages 15 to 39 years with cancer continue to experience disparate survival outcomes compared with their younger and older counterparts. This may be caused in part by differential access to specialized cancer centers (SCCs), because treatment at SCCs has been associated with improved overall survival. The authors examined social and clinical factors associated with AYA use of SCCs (defined as Children's Oncology Group-designated or National Cancer Institute-designated centers).A retrospective, population-based analysis was performed on all hospital admissions of AYA oncology patients in California during 1991 through 2014 (n = 127,250) using the Office of Statewide Health Planning and Development database. Multivariable logistic regression analyses examined the contribution of social and clinical factors on always receiving care from an SCC (vs sometimes or never). Results are presented as adjusted odds ratios (ORs) and 95% confidence intervals (CIs).Over the past 20 years, the percentage of patients always receiving inpatient care at an SCC increased over time (from 27% in 1991 to 43% in 2014). In multivariable regression analyses, AYA patients were less likely to always receive care from an SCC if they had public insurance (OR, 0.64; 95% CI, 0.62-0.66), were uninsured (OR, 0.51; 95% CI, 0.46-0.56), were Hispanic (OR, 0.88; 95% CI, 0.85-0.91), lived 5 miles from an SCC, or had a diagnosis other than leukemia and central nervous system tumors.Receiving care at an SCC was influenced by insurance, race/ethnicity, geography, and tumor type. Identifying the barriers associated with decreased SCC use is an important first step toward improving outcomes in AYA oncology patients. Cancer 2017;123:2516-23. © 2017 American Cancer Society.

In order to determine long-term outcome, including survival, growth and development, following liver transplantation in children with metabolic disorders, we retrospectively reviewed charts of 54 children with metabolic disorders evaluated from 1989-2005 for presenting symptoms, transplantation timing and indications, survival, metabolic parameters, growth, and development. Thirty-three patients underwent liver transplantation (12 received combined liver-kidney transplants) at a median age of 21 months. At a median follow-up of 3.6 yr, patient survival was 100%, and liver and kidney allograft survival was 92%, and 100%, respectively. For the group as a whole, weight Z scores improved and body mass index at follow-up was in the normal range. Two yr post-transplantation, psychomotor development improved significantly (p < 0.01), but mental skills did not; however, both indices were in the low-normal range of development. When compared to patients with biliary atresia, children with metabolic disorders showed significantly lower mental developmental scores at one and two yr post-transplantation (p < 0.05), but psychomotor developmental scores were not significantly different. We conclude that, in patients with metabolic disorders meeting indications for transplantation, liver transplantation or combined liver-kidney transplantation (for those with accompanying renal failure) is associated with excellent long-term survival, improved growth, and improved psychomotor development.

Subcutaneous panniculitis-like T-cell lymphoma (SPTCL) and primary cutaneous gamma delta T-cell lymphoma (PCGD-TCL) were initially both classified as subcutaneous panniculitis-like T-cell lymphoma. In 2008, SPTCL with alpha-beta T-cell receptor subtype was separated from primary cutaneous gamma delta T-cell lymphomas (PCGD-TCL). We report four pediatric cases that demonstrate the heterogeneity of each disease and show that PCGD-TCL in children can have an indolent course, whereas SPTCL can behave aggressively. Three patients had spontaneous, durable remissions without treatment, whereas the one patient with disease progression was treated successfully. Watchful waiting may thus be appropriate for initial management of children.

10574 Background: There is growing evidence that adult oncology patients who know they are dying choose less intense care. Further, high intensity care is associated with worse caregiver outcomes. Little is known about pediatric oncology end-of-life care intensity. Methods: Using the California Office of Statewide Health Planning and Development administrative database linked to death certificates, we performed a retrospective population based analysis of cancer patients aged 0-21 who died between 2000 and 2011. The frequency of previously defined end-of-life intensity markers (hospital death, intense medical interventions, IV chemotherapy, and gastrostomy and tracheostomy tube placement) were calculated and multivariable logistic regression was used to determine clinical and sociodemographic factors associated with > 2 intensity markers (as above), intense medical intervention (cardiopulmonary resuscitation, intubation, ICU admission, or hemodialysis), and hospital death. Results: The 3,732 pediatric cancer decedents were 34% non-Hispanic whites and 45% Hispanic; 41% had hematologic malignancies and 59% solid tumors. The most prevalent intensity markers included: hospital death (63%) and ICU admission (20%). 65% had > 1 intensity marker, 23% > 2, and 22% > 1 intense medical intervention. There was a bimodal association between age and intensity: the youngest patients (age < 5) and adolescent patients (age 15-21) were more likely to receive intense care: < 5y (intense medical intervention: OR = 1.42; 95% CI, 1.1-1.9; hospital death: OR = 1.72; 95% CI, 1.4-2.2; > 2 markers: OR = 1.37, 95% CI 1.1-1.8); 15-21y (intense medical: OR = 1.48; 95% CI, 1.2-1.9; hospital death: OR = 1.39; 95% CI, 1.1-1.7; > 2 markers: OR = 1.35, 1.1-1.7) (references: 5-9y). Other factors associated with intensity included, hematologic malignancies, minority status, and death between 2008 and 2011 vs. < 2008. Conclusions: Nearly two-thirds of the pediatric cancer decedents had ≥1 marker of intense care and disparities exist. Patients < 5 and adolescents were more likely to receive intense end-of-life care. Further research needs to determine if these rates and variation are consistent with patient goals and factors associated with goal concurrent care.