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Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia.Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses.A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course.We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia.

PURPOSE The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated multidisciplinary care, and lack of adequate resources. The reasons for late presentation are partly due to limited awareness of cancer symptoms, high treatment costs, and facility-level barriers to timely access to treatment. Given the systemic challenges, the regional need for palliative oncology care for children care is high. Despite the enormity of the need for palliative oncology for children with cancer in Africa, its level of development remains poor. This paper presents the evidence on the status of palliative oncology care for children in sub-Saharan Africa. METHODS This review provides an overview of the current status of palliative oncology care for children in sub-Saharan Africa, using the WHO building blocks for health systems strengthening as reference points, before proposing a forward-looking prioritized agenda for its development. RESULTS We noted that survival rates for children with cancer remain much poorer in Africa compared with developed countries and palliative oncology care resources are scant. Our results also show low coverage for palliative oncology care services for children, lack of a critical mass of health workers with the skills to deliver the care, a lack of robust documentation of the burden of cancer, widespread lack of access to essential controlled medicines, limited funding from government and limited coverage for palliative oncology care in most cancer control plans. CONCLUSION This review highlights priority areas for action that align to the WHO health system building blocks for strengthening health systems., Countries must prioritize integration of pediatric palliative care in SSA pediatric oncology.

Context The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic. Methods The P alliative A ssessment of N eeded DE velopments & M odifications I n the Era of C oronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey. Results One hundred and fifty-six providers were included in the final analysis with 59 countries and six continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients’ pain, fear, and isolation. Conclusions PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams. Article Summary This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents’ distress in provision of comfort at the end of life.

Introduction: Diffuse alveolar hemorrhage (DAH) is an early pulmonary complication of hematopoietic cell transplantation (HCT) associated with severe hypoxemic respiratory failure and mortality. Extracorporeal membrane oxygenation (ECMO) support is often used for respiratory failure refractory to conventional interventions; however, its use has been limited in HCT patients with DAH due to potential for worsening alveolar hemorrhage and reported high mortality.Case Presentation: We report two cases of DAH following HCT who developed refractory hypoxemic respiratory failure despite cessation of bleeding and were successfully supported with ECMO.Conclusion: DAH after HCT should not automatically preclude ECMO support; rather, these patients must be evaluated individually for ECMO within the context of their overall clinical picture.

CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.

The World Health Organization (WHO) designates early integration of palliative care as an ethical responsibility in the treatment of children with serious illness. Although structural barriers may influence provision of pediatric palliative care (PPC) for children with cancer in resource-limited settings, underlying physician perceptions may also impede early integration of PPC in cancer care.To investigate perceptions among physicians in Latin America about the integration of palliative care for children with cancer.This survey study used the Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, which was developed for physicians who care for children with cancer and was initially distributed in Eurasia. The survey was modified for use in Latin America, including translation into Spanish and adaptation for cultural context. The survey was distributed between August 21, 2020, and January 31, 2021, to physicians treating children with cancer in 17 Latin American countries. Each country had a specific survey distribution method based on guidance of local experts.The ADAPT survey evaluated physicians' understanding of palliative care principles, comfort in addressing patient and family suffering, and identification of barriers to PPC integration for children with cancer. Univariate and multivariable linear regression analyses were used to assess factors associated with physicians' knowledge about and comfort with PPC practice and whether independent physician variables were associated with survey response alignment with WHO guidance on PPC. Open-ended questions were analyzed qualitatively to supplement the quantitative data.A total of 874 physicians from 17 countries participated, with an overall response rate of 39.9% (874 of 2193) and a median country response rate of 51.4% (range, 23.7%-100%). Most respondents were aged 35 years or older (577 [66.0%]), and 594 (68.0%) identified as female. Most physicians (486 [55.6%]) had no formal PPC training, and 303 (34.7%) had no access to PPC experts for consultation. Physician perspectives on PPC were generally aligned with WHO guidance (mean [SD] alignment, 83.0% [14.1%]; range among respondents, 24.0%-100%). However, only 438 respondents (50.1%) felt comfortable addressing physical symptoms of patients receiving PPC, 295 (33.8%) felt comfortable addressing emotional symptoms, and 216 (24.7%) felt comfortable addressing grief and bereavement needs of the patient's family. A total of 829 participants (94.8%) desired further education and training in PPC.Although physicians' perspectives aligned well with WHO guidance for PPC, this survey study identified opportunities for improving physician training in symptom management and emotional support for children with cancer and their families. These findings may inform the development of targeted interventions to improve the quality of PPC for children with cancer in Latin America.

BACKGROUND The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low-income and middle-income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia. METHODS The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence-based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open-ended responses. RESULTS A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%-96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P

Background The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care. Methods The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses. Results This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care. Conclusions This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context.

Background Widespread implementation of electronic health records (EHR) has created new opportunities for pediatric oncology observational research. Little attention has been given to using EHR data to identify patients with pediatric hematologic malignancies. Methods This study used EHR-derived data in a pediatric clinical data research network, PEDSnet, to develop and evaluate a computable phenotype algorithm to identify pediatric patients with leukemia and lymphoma who received treatment with chemotherapy. To guide early development, multiple computable phenotype-defined cohorts were compared to one institution's tumor registry. The most promising algorithm was chosen for formal evaluation and consisted of at least two leukemia/lymphoma diagnoses (Systematized Nomenclature of Medicine codes) within a 90-day period, two chemotherapy exposures, and three hematology-oncology provider encounters. During evaluation, the computable phenotype was executed against EHR data from 2011 to 2016 at three large institutions. Classification accuracy was assessed by masked medical record review with phenotype-identified patients compared to a control group with at least three hematology-oncology encounters. Results The computable phenotype had sensitivity of 100% (confidence interval [CI] 99%, 100%), specificity of 99% (CI 99%, 100%), positive predictive value (PPV) and negative predictive value (NPV) of 100%, and C-statistic of 1 at the development institution. The computable phenotype performance was similar at the two test institutions with sensitivity of 100% (CI 99%, 100%), specificity of 99% (CI 99%, 100%), PPV of 96%, NPV of 100%, and C-statistic of 0.99. Conclusion The EHR-based computable phenotype is an accurate cohort identification tool for pediatric patients with leukemia and lymphoma who have been treated with chemotherapy and is ready for use in clinical studies.

10053 Background: While great strides have transpired in pediatric cancer management in high-income countries (HICs), more than 80% of all children with cancer live in low-and middle-income countries (LMICs),where fewer than 20% will be cured. The World Health Organization (WHO) has stated that early integration of palliative care is an ethical responsibility in the management of children with life-limiting illness. While structural barriers impact the ability to deliver pediatric palliative care (PPC), underlying stigma also prevents early integration of PPC. Methods: The Assessing Doctor’s Attitudes on Palliative Treatment (ADAPT) survey was created for physicians of all specialties who care for children with cancer, initially used in Eurasia. Survey questions evaluated provider perceptions on timing of palliative care integration, scope of palliative treatment, physician responsibility, and ethical issues. This survey was adapted for use in Latin America, including translation to Spanish and reviewed by regional palliative care specialists for syntax, comprehension, and cultural relevance. The survey was then distributed to physicians treating children with cancer in the region. To assess provider’s perspectives on palliative care, we used fifteen statements from the WHO 2018 guidelines, describing general palliative care principles. Results are reported as percent of alignment with guidelines. Results: A total of 1,039 participants from 16 countries in Latin America completed the survey, with a median country response rate of 66% (range 26%-100%). Thirty-six specialties were represented with 34% general pediatricians and 23% pediatric hematologist/oncologists. The majority (59%) had received no PPC training and 37% had no access to PPC experts for consultation in their practice setting. On average, provider’s perspectives on PPC were aligned with the WHO guidelines (81% alignment, range 53%-96%). However, almost half (42%) felt that the integration of pediatric palliative occurred too late in the course of treatment. Additionally, less than half (47%) of respondents felt comfortable addressing the physical symptoms of their patients, 33% felt comfortable addressing emotional symptoms, and only 26% felt comfortable addressing grief and bereavement for the patient’s family. The most common barriers identified were a lack of home-based services (87%), a lack of physician knowledge on the role of PPC (84%), and physician discomfort in discussing palliative care with families (81%). Nearly all (95%) wanted more training in PPC. Conclusions: Most physicians who completed the survey were not confident in providing symptomatic and supportive care for their patients and families. This study will guide targeted interventions for education in PPC for physicians in Latin America as well as interventions to address barriers which impede earlier palliative care integration in the region.

While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.

Introduction Autologous hematopoietic cell transplantation (AutoHCT) has been shown to improve survival in patients with relapsed Hodgkin lymphoma (HL). This treatment strategy results in temporary cytopenia, routinely requiring hematopoietic transfusion support until marrow recovery. Jehovah's Witnesses (JW) commonly refuse blood product transfusions as part of their religious practice. Several adult transplant centers report success in treating JW using a transfusion-free AutoHCT, with low rates of bleeding and mortality. To our knowledge, there are no reported cases of transfusion-free AutoHCT in a pediatric patient. Case Description A 15 year old Jehovah's Witness presented to our institution with refractory nodular sclerosing HL. The patient received relapse therapy, demonstrated a very good partial response, and was referred for AutoHCT. Given her JW beliefs, AutoHCT needed to be provided using a transfusion-free approach. A multidisciplinary team met to discuss this case and establish a plan to provide transfusion-free AutoHCT, including efforts to optimize blood counts pre-HCT, minimize blood loss and bleeding risk during transplant, and promote engraftment. Prior to transplant she was started on iron supplementation as well as GnRH-analogue to suppress menses. The patient had normal blood counts pre-transplant. To minimize blood loss and bleeding risk during AutoHCT, frequency and volume of laboratory testing were decreased, and the patient received prophylactic vitamin K and an anti-fibrinolytic. The transplant included high-dose chemotherapy using a BeEAM (bendamustine, etoposide, cytarabine, melphalan) regimen, following by infusion of 6 × 106 CD34+ cells/kg. In attempt to promote rapid marrow recovery of all cell lines, the patient received marrow stimulants: EPO agonist, TPO agonist, and GCSF post-transplant. During the nadir of AutoHCT (hemoglobin 6.3 g/dL, platelets 2,000/mm3), the patient experienced symptoms of anemia (fatigue and light-headedness) and had minor mucosal bleeding (GI). Her ANC was >500/mm3 on day +10 and platelets >50,000/mm3 on day +12. Complications of AutoHCT included development of a line associated thrombus (Day +12), treated with low molecular weight heparin. Discussion Treatment of malignancy can be challenging for JW patients due to refusal of blood products, particularly if they require intensified treatment such as AutoHCT. A review of our institutional experience with AutoHCT for HL using BeEAM showed that on average, patients received 2 packed red blood cell and 6 platelet transfusions. Using the strategies above, we safely provided a transfusion-free AutoHCT to a pediatric patient. Transfusion-free transplant in a pediatric patient presents unique challenges that require careful consideration and planning from a multidisciplinary team including leaders in lymphoma, transplant, hematology, and ethics.

Extramedullary leukemia (EML) is common in pediatric acute leukemia and can present at diagnosis or relapse. CD33 is detected on the surface of myeloid blasts in many patients with acute myelogenous leukemia and is the target of the antibody drug conjugate gemtuzumab ozogamicin (GO). Here we present 2 patients with CD33 EML treated with GO. They achieved significant response, with reduction of EML on both clinical and radiographic exams, specifically fluorine fluorodeoxyglucose positron emission tomography/computed tomography, demonstrating potential for targeted therapy with GO as a means of treating EML in patients with CD33 leukemia and the utility of fluorine fluorodeoxyglucose positron emission tomography/computed tomography monitoring in EML.

Background and objectives Influenza causes significant annual burden among children. Current guidelines recommend empiric treatment for a broadly defined group of children at high risk for influenza complications, resulting in overtreatment or costly viral testing. This study creates an algorithm for clinicians to risk stratify children with influenza-like illness (ILI) according to likelihood of influenza infection. Methods A retrospective analysis was performed on 818 children seen in the emergency department from November 2012 to April 2013 for ILI. We reviewed medical records for symptoms, influenza risk factors, and viral assay results. Classification and regression tree analyses were performed separately for children older and younger than 2 years. Results In children younger than 2 years, populations likely to test positive were those with an influenza-positive contact, unimmunized children, and those presenting in high-incidence influenza periods. In this subgroup, immunized patients in low-incidence seasons and those with absence of cough are low risk for influenza infection. For children 2 years and older, high-risk populations were unimmunized children, those presenting in high-incidence influenza periods and those with myalgia or absence of diarrhea. Conclusions These risk-stratification analyses were summarized into Suspected Pediatric Influenza Risk-Stratification Algorithm (SPIRA). For those in whom influenza infection is likely, clinicians may consider empiric treatment. Conversely, patients whom SPIRA identifies as unlikely to be infected with influenza are candidates for viral testing and targeted treatment. In assessing children with ILI, SPIRA aids clinicians in determining who to test versus treat empirically, saving children from costly viral testing or unnecessary antiviral exposure.

Cerebral developmental venous anomalies (DVAs) are benign anatomical variants of the venous system and are commonly described as an incidental finding without clinical significance. Neurologic symptoms or abnormal examination findings are rare and usually attributed to hemorrhagic complications related to coexisting cavernous malformations. There have been limited case reports of symptomatic, uncomplicated DVAs described in the literature. The following case describes a previously healthy child who presented to the emergency department with an acute onset of altered mental status, headache, and focal neurologic examination abnormalities. Magnetic resonance imaging revealed a prominent cerebellar DVA. There was no evidence of a cavernous angioma, hemorrhage, or acute parenchymal injury. This case report illustrates a clinically symptomatic, uncomplicated posterior fossa DVA. It provides additional evidence regarding the potential for a cerebral venous malformation in causing focal neurologic deficits.

Although uncommon, the incidence of cancer complicating pregnancy is increasing. Managing these pregnancies creates many diagnostic, therapeutic, and ethical dilemmas for the patient, her family, and the medical care team. Despite concerns for fetal well-being, maternal survival should be the first priority. Although surgery and chemotherapy may be used during pregnancy, radiation is generally contraindicated. For most nongynecologic cancers, termination of pregnancy does not improve maternal outcome. Iatrogenic prematurity is the most common pregnancy complication associated with malignancy in pregnancy because many of these infants are delivered early to facilitate maternal treatment. Overall, maternal cancer survival is generally good and does not differ from that of nonpregnant patients.

© 2015 American Academy of Hospice and Palliative Medicine. Context: Patients with advanced illness are prescribed multiple medications in the last year of life, intensifying the risk of negative consequences related to polypharmacy. Objectives: To describe the medication burden of patients near the end of life and identify potential areas for improvement in clinician prescribing practices. Methods: This was a prespecified secondary analysis of data from a prospective trial. Eligible participants were adults with less than 12 months estimated prognosis taking a statin medication for primary prevention of cardiovascular disease. Participants were enrolled from 15 sites, randomized to continue or discontinue statin medications, and followed for up to a year. Concomitant medications were recorded at least monthly from study enrollment through death. Prescribed medications were categorized by class and subclass. Descriptive statistics were calculated. Results: On average, participants (n = 244) were 74.3 years old (SD 11.5) and lived 264 days (SD 128); 47.5% of the patients had a primary diagnosis of malignant tumor. This population was exposed to medications across 51 classes, 192 subclasses, and 423 individual medications. Patients took an average of 11.5 (SD 5) medications at the time of enrollment and 10.7 (SD 5) medications at death or study termination. The five most common classes of medications prescribed near the end of life were antihypertensives, broncholytics/bronchodilators, laxatives, antidepressants, and gastric protection agents. Conclusion: There is a significant medication burden placed on patients with advanced illness. Although most medications were prescribed for supportive care, we observed a high prevalence of medications for managing non-life-threatening comorbidities.

Summary Polypharmacy is a well known problem in elderly patients in general, but its prevalence and effects in patients with cancer are less clear, particularly in end-of-life settings. This Review examines the existing literature on polypharmacy in advanced cancer and end-of-life settings by reviewing evidence-based approaches to reduce polypharmacy, and outlining the potential benefits of decreasing the number of drugs that patients with cancer can take, with emphasis on the need for thoughtful discontinuation initiatives in the context of life-limiting malignant disease. In view of the apparent burden of polypharmacy in patients with advanced cancer, we expect that greater attention to polypharmacy could lead to improvements in adverse drug events, cost, and possibly quality of life. However, few data for specific interventions in the advanced cancer population are available, and thus more research is warranted.

112 Background: The number of prescribed medications increases substantially in the last year of life aggravating the risk of polypharmacy, adverse reactions and medication non-adherence. What medications do patients with life-limiting illness take? Methods: This was a pre-specified secondary analysis of data from a prospective trial. Eligible participants were adults with a 10 medicines, is common in the last year of life for people with cancer. Patients commonly receive supportive care medications and drugs for comorbidities like hypertension; antineoplastics are rare. Thoughtful approaches to medication simplification in the palliative care setting are needed.