Pediatric Oncology Centers Research Articles

Implementation of a Standardized Data Collection Tool for Febrile Episodes in Childhood Cancer Patients in Central America and the Caribbean

Abstract Fever is a common sign of infection and is associated with morbidity and treatment delay in childhood cancer patients. A multinational group of physicians identified the need to develop standardized measures to assess and intervene in the quality of care delivery as measured by adherence to the fever management guidelines published by this group in 2020. Our objective was to create an implement a febrile neutropenia registry that included data for quality assessment. Six sites in Central America and the Caribbean implemented a prototype of a Fever Registry for standardized data collection. Variables collected in the registry included demographic information and quality measures like the performance of selected laboratory tests (neutrophil count and blood culture) and time to antibiotic administration. Sites also collected clinical outcomes, including infection diagnosis, microbiologic diagnosis, critical care support requirements, length of hospital stay, and mortality. The initial implementation cohort included one dedicated pediatric oncology center and five oncology services situated within general pediatric hospitals. From September 9, 2021 to December 5, 2022, the six sites contributed 188 fever episodes from 148 unique patients. The maximum number of fever episodes entered for a single patient was 6 episodes. The distribution of cases entered in the database by site ranged between 5 to 54 cases (average patients enrolled per site=25). 84.9% of iCRFs(Case Report forms) had complete data. The most common incomplete data fields were: Initial antimicrobial administered (9/175=5.1%), nutritional status (6/181=3.3%), and was urinalysis performed at onset of fever (6/181=3.3%). Implementation strategies were developed incorporating responses to a survey based on the Consolidated Framework for Implementation Research. Infectious diseases specialists, who were the site leads, directed the implementation efforts at each site. The coordinating team encouraged sites to incorporate hematologists/oncologists and data managers as part of the team. However, team composition and internal meeting frequency were at the discretion of the site leads. Every site elected to use a paper data collection tool to facilitate centralized data entry, which was conducted by a data manager in all but one site. Staff at local sites received two initial trainings and a retraining by St. Jude staff to identify eligible patients and complete data fields appropriately. Group meetings with all site leads were conducted monthly to review progress and challenges and for quality assurance. The challenges most cited were personnel limitations for data collection and data entry. Surges exacerbated these challenges in caseloads related to respiratory illnesses, including SARS-CoV-2, influenza, and RSV. Conclusion: This group has created and implemented a tool to facilitate standardized data collection for a common clinical problem. Implementation challenges highlight the role of human resources and simplifying data collection to minimize data entry time. Current efforts include developing interim reports so clinicians can use data to improve the quality of care delivery in real-time. The group is also revising data fields to remove data points that are often unavailable or unnecessary to measure care quality. Project implementation in these six sites exposed opportunities to streamline the data collection system and optimize the implementation process.

Sustainability determinants of an intervention to identify clinical deterioration and improve childhood cancer survival in Latin American hospitals: the INSPIRE study protocol

BackgroundMore than 90% of children with cancer live in low-resourced settings, where survival is only 20%. Sustainable evidence-based (EB) interventions yielding ongoing beneficial patient outcomes are critical to improve childhood cancer survival. A better understanding of factors promoting intervention sustainability in these settings is urgently needed. The aim of this study is to provide an empirical understanding of how clinical capacity for sustainability, or the resources needed to sustain an intervention, impacts the sustainment of Pediatric Early Warning System (PEWS), an EB intervention that improves pediatric oncology outcomes in low-resource hospitals by detecting clinical deterioration and preventing the need for more intense treatment.MethodsWe will conduct a prospective, longitudinal study of approximately 100 resource-variable hospitals implementing and sustaining PEWS participating in Proyecto EVAT, a quality improvement collaborative of Latin American pediatric oncology centers. Aim 1: We will evaluate how clinical capacity for sustainability changes over time through 5 to 9 prospective measurements of capacity via survey of clinical staff using PEWS (approximately n = 13 per center) during the phases of PEWS adoption, implementation, and sustainability using the Clinical Sustainability Assessment Tool (CSAT). Aim 2: We will determine the relationship between capacity and a) PEWS sustainment and b) clinical deterioration mortality among pediatric oncology patients at centers sustaining PEWS for 2 to 10 years using chart review and an existing patient outcomes registry. Aim 3: We will develop novel strategies to promote sustainability by gaining a deeper understanding of perceived challenges to building capacity and PEWS sustainment. In combination with quantitative outcomes, we will conduct 24 focus groups with staff (doctors, nurses, and administrators) from hospitals with both high (n = 4) and low capacity (n = 4). We will then use implementation mapping to generate theoretically driven, empirically-supported sustainability strategies.DiscussionThis study will advance implementation science by providing a theoretically driven, foundational understanding of factors that predict sustainability among a large, diverse cohort of hospitals. We will then use this knowledge to develop sustainability evidence-informed strategies that optimize capacity and promote long-term sustainment of PEWS and improvements in patient outcomes, thus promoting equity in childhood cancer care globally.

Palliative care services in paediatric oncology centers across Europe: A cross-sectional survey

BackgroundPalliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. AimTo describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). MethodsPaediatric oncology centres across Europe were invited to complete an online questionnaire. ResultsA total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n = 102, 64.6 %) reported offering specialised PPC (defined as 24/7 coverage services with a specialised physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n = 123, 80.9 %) and PC at home (n = 105, 69.1 %). In 38.7 % centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n = 126, 81.2 %). Few centres (n = 11, 7.1 %) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6 %) reported having bereavement services. Negative parental perception (n = 99, 64.7 %) and late referrals (n = 91, 59.5 %) were major barriers to implementation perceived by health care providers. ConclusionOur results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for > 10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.

Connecting Clinical Capacity and Intervention Sustainability in Resource-Variable Pediatric Oncology Centers in Latin America

Clinical capacity for sustainability, or the clinical resources needed to sustain an evidence-based practice, represent proximal determinants that contribute to intervention sustainment. We examine the relationship between clinical capacity for sustainability and sustainment of PEWS, an evidence-based intervention to improve outcomes for pediatric oncology patients in resource-variable hospitals. We conducted a cross-sectional survey among Latin American pediatric oncology centers participating in Proyecto Escala de Valoración de Alerta Temprana (EVAT), an improvement collaborative to implement Pediatric Early Warning Systems (PEWS). Hospitals were eligible if they had completed PEWS implementation. Clinicians were eligible to participate if they were involved in PEWS implementation or used PEWS in clinical work. The Spanish-language survey consisted of 56 close and open-ended questions about the respondent, hospital, participants’ assessment of clinical capacity to sustain PEWS using the clinical sustainability assessment tool (CSAT), and perceptions about PEWS and its use as an intervention. Results were analyzed using a multi-level modeling approach to examine the relationship between individual, hospital, intervention, and clinical capacity determinants to PEWS sustainment. A total of 797 responses from 37 centers in 13 countries were included in the analysis. Eighty-seven percent of participants reported PEWS sustainment. After controlling for individual, hospital, and intervention factors, clinical capacity was significantly associated with PEWS sustainment (OR 3.27, p < .01). Marginal effects from the final model indicate that an increasing capacity score has a positive influence (11% for every additional CSAT point) of predicting PEWS sustainment. PEWS is a sustainable intervention and clinical capacity to sustain PEWS contributes meaningfully to PEWS sustainment.

Tunneled vascular access surgery in pediatric oncology; Experience from a national pediatric oncology center

Central venous access is essential in the treatment of children diagnosed with cancer. Therefore, as a paediatric oncologist/surgeon, it is important to identify the most optimal central venous catheter (CVC) for each patient, to accurately perform CVC surgery and to be aware of the possible complications that can occur and how to prevent and treat them. The aim of this article is to provide an overview of recommendations for CVC choice, methods for tunneled CVC surgery and strategies for perioperative complication treatment. This is based on the experience of the surgeons from our national paediatric oncology center in the Netherlands, inserting 700 CVCs each year.

IMMU-53. MONITOR THE IMMUNE MICROENVIRONMENT AND SYSTEMIC IMMUNE EFFECTS IN PEDIATRIC BRAIN TUMORS – THE MIMIC PROGRAM

Abstract INTRODUCTION Dismal outcomes of pediatric high-grade CNS tumors demand new therapeutic strategies. A better understanding of the immune system may contribute to designing better immunotherapies for these children. The MIMIC program (Dutch Trial Registry NL8967) is a prospective observational longitudinal cohort study, conducted in patients with newly diagnosed or relapsed high-grade CNS tumors with the aim of characterizing and quantifying changes in immune parameters at diagnosis and during treatment. METHODS All patients with a newly diagnosed or relapsed high-grade CNS tumor are included after obtaining informed consent. Patient study material is collected longitudinally and includes tumor tissue (TT), Cavitron Ultra Sonic Aspirator (CUSA) material and optional bone marrow aspiration (BM) at diagnosis and relapse. Cerebrospinal fluid (CSF), peripheral blood (PB) and fecal samples (FS) at diagnosis, 3 months, 6 months, 12 months, relapse and additionally collection of CSF and FS at 14 days. Furthermore, FS is collected from patient siblings as a reference. RESULTS The MIMIC program has opened in June 2021 in the Princess Máxima Center, the national pediatric oncology center in the Netherlands, including so far 47 patients (out of ~60 eligible patients annually). More than 400 samples, out of which 46 TT, 34 CUSA, 65 CSF, 14 BM, 143 PB, and 105 FS have been collected. All samples are subject to extensive immunological profiling using 70+ markers flow cytometry panels (PB, TT, CUSA, CSF, BM), (spatial single cell) RNA and protein profiling (TT, CUSA, BM), immunohistochemistry (TT), proteomics (CSF and PB), and 16S rRNA or shotgun metagenomic sequencing (FS). CONCLUSION The MIMIC program demonstrates the feasibility of obtaining various samples for pediatric high-grade CNS tumors. By incorporating multiple technologies in longitudinal samples, the MIMIC program provides insight into the different immune compartments and their relation to the tumor, forming the base for future clinical trials with immunotherapy.

Safe and Effective Escalation of Evidence-Based Chemotherapy for Mature B Cell Non-Hodgkin's Lymphoma in a Low Resource Setting

BACKGROUND Although high intensity chemotherapy regimens result in &amp;gt;90% long term survival of children with Mature B-cell Non-Hodgkin Lymphoma (MB-NHL), low intensity chemotherapy regimens are used in most Sub-Sahara African (SSA) setting resulting in decades of less than 20% long term survival. This is in part because dose-intense chemotherapy strategies that are standard of care in high income countries (HIC) have not been widely or effectively implemented in low- and middle income countries (LMIC). We investigated the toxicity and outcomes of children with MB-NHL who were treated with a treatment regimen that includes 1g/M2 of methotrexate per dose (mini COPADM) at Mulago National Referral Hospital in Uganda. The objective of this study was to evaluate the safety and effectiveness of an incremental chemotherapy escalation strategy to control treatment-related toxicities and increase response and survival of children treated for MB-NHL at a pediatric oncology center in the SSA setting. METHODS We prospectively collected clinical outcomes on children under 18 years with MB-NHL at Mulago National Referral Hospital (MNRH) in Uganda between January 2020 and July 2023. Overall (OS) and event-free survival (EFS) were calculated using the Kaplan-Meier method. Events in the EFS analysis were: 1) Death; 2) Relapse; or 3) Persistent or progressive disease at the end of Cycle 3. Patients were censored at the earlier of two years from presentation or their last day of follow-up. Descriptive statistics were presented. Toxicities were graded according to Common Terminology Criteria for Adverse Events (CTCAE) version 5. RESULTS We identified 77 patients, among whom 16 (21%) died prior to commencement of the first cycle of chemotherapy and 6 (8%) treated with alternative therapies. The 55 patients who were treated with mini COPADM with 1g/M 2 of methotrexate and are included in this analysis had similar demographics and clinical phenotypes to the 22 that were excluded. The median age was 9.6 years (interquartile range ((IQR) 6.6 - 11.7 years) with 38 (69%) males. Patients were Stage III (53%, 29/55), stage IV (38%, 21/55); and 55%, (30/55) were high-risk. The most common presentations were abdominal mass 43 (78%) and jaw mass 14 (25%). With a median follow-up time of 9 months (IQR 6 - 24 months), the 1-year overall survival (OS) and event free survival (EFS) were 56%; 95% CI (41 - 76) and 41%; 95%CI (27 - 61) respectively. For children with high-risk disease, 1-year OS was 44%; 95%CI (28 - 72) and EFS 25%; 95% CI (12 - 51). Toxicities included febrile neutropenia (83%) and CTCAE grade ≥3 mucositis (44%). For the 12 patients whose cause of mortality was recorded, 1 case (8.3%) was treatment-related and 11 (91.7%) were due to cancer. CONCLUSION: This study establishes baseline response rates, survival, and toxicity for patients with pediatric MB-NHL in Uganda treated with 1g/M2 of methotrexate. Toxicities were consistent with treatment received, perhaps exacerbated by synergy of anthracycline (50 mg/m2) along with intermediate dose MTX. These findings suggest that mini-COPADM with 1g/M 2 of methotrexate can be safely supported with the current clinical resources at MNRH and this low dose regimen accounts for the poor survival of children with MB-NHL in our center. We plan to escalate our therapy to mini-COAPDM with 3g/M2 and addition of Rituximab, with contingent intensification of supportive care to curb treatment-related toxicities.

Survival nomogram for medulloblastoma and multi-center external validation cohort.

Background: Medulloblastoma (MB) is a highly malignant neuroepithelial tumor occurring in the central nervous system. The objective of this study was to establish an effective prognostic nomogram to predict the overall survival (OS) of MB patients. Materials and methods: The nomogram was developed using data from a retrospective cohort of 280 medulloblastoma patients (aged 3-18years) identified from Beijing Tiantan Hospital between 2016 and 2021 as the training cohort. To validate the performance of the nomogram, collaborations were formed with eight leading pediatric oncology centers across different regions of China. A total of 162 medulloblastoma patients meeting the inclusion criteria were enrolled from these collaborating centers. Cox regression analysis, best subsets regression, and Lasso regression were employed to select independent prognostic factors. The nomogram's prognostic effectiveness for overall survival was assessed using the concordance index, receiver operating characteristic curve, and calibration curve. Results: In the training cohort, the selected variables through COX regression, best subsets regression, and Lasso regression, along with their clinical significance, included age, molecular subtype, histological type, radiotherapy, chemotherapy, metastasis, and hydrocephalus. The internally and externally validated C-indexes were 0.907 and 0.793, respectively. Calibration curves demonstrated the precise prediction of 1-, 3-, and 5-year OS for MB patients using the nomogram. Conclusion: This study developed a nomogram that incorporates clinical and molecular factors to predict OS prognosis in medulloblastoma patients. The nomogram exhibited improved predictive accuracy compared to previous studies and demonstrated good performance in the external validation cohort. By considering multiple factors, clinicians can utilize this nomogram as a valuable tool for individualized prognosis prediction and treatment decision-making in medulloblastoma patients.

Prognostic significance of molecular subgroups in survival outcome for children with medulloblastoma in Malaysia.

Advancements in genomic profiling led to the discovery of four major molecular subgroups in medulloblastoma (MB), which have now been incorporated into the World Health Organization classification of central nervous system tumors. The current study aimed to determine the prognostic significance of the MB molecular subgroups among children in Malaysia. We assembled MB samples from children <18 years between January 2003 and June 2017 from four pediatric oncology centers in Malaysia. MB was sub-grouped using 850k DNA methylation testing at German Cancer Research Centre, Heidelberg, Germany. Fifty samples from patients diagnosed and treated as MB were identified. Two (4%) of the 50 patients' tumor DNA samples were insufficient for analysis. Of the remaining 48 patients, 41 (85%) samples were confirmed as MB, while for 7 (15%) patients, DNA methylation classification results were discrepant with the histopathological diagnosis of MB, with various other diagnoses. Of the 41 MB patients, 15 patients were stratified as standard-risk (SR), 16 patients as high-risk (HR), and ten as infants (age <3 years old). Molecular subgrouping of the whole cohort revealed four (14%) WNT, 11 (27%) SHH, 10 (24%) Group 3, and 16 (39%) Group 4. Treatment abandonment rates for older children and infants were 22.5% and 10%, respectively. After censoring treatment abandonment, for SR patients, the 5-year event-free survival (EFS) and overall survival (OS) were 43.1% ± 14.7% and 46.9 ± 15.6%, respectively, while in HR, 5-year EFS and OS were both 63.6% ± 14.5%. Infants had a 5-year EFS and OS of 55.6% ± 16.6% and 66.7% ± 15.7%, respectively. WNT tumors had the best 5y-OS, followed by Group 3, Group 4, and SHH in children ≥3 years old. In younger children, SHH MB patients showed favorable outcomes. The study highlights the importance of DNA methylation profiling for diagnostic accuracy. Most infants had SHH MB, and their EFS and OS were comparable to those reported in high-income countries. Due to the relatively small cohort and the high treatment abandonment rate, definite conclusions cannot be made regarding the prognostic significance of molecular subgroups of MB. Implementing this high-technology investigation would assist pathologists in improving the diagnosis and provide molecular subgrouping of MB, permitting subgroup-specific therapies.

A Nationwide Study of GATA2 Deficiency in Italy Reveals Novel Symptoms and Genotype-phenotype Association.

GATA2 deficiency is a rare disorder encompassing a broadly variable phenotype and its clinical picture is continuously evolving. Since it was first described in 2011, up to 500 patients have been reported. Here, we describe a cohort of 31 Italian patients (26 families) with molecular diagnosis of GATA2 deficiency. Patients were recruited contacting all the Italian Association of Pediatric Hematology and Oncology (AIEOP) centers, the Hematology Department in their institution and Italian societies involved in the field of vascular anomalies, otorhinolaryngology, dermatology, infectious and respiratory diseases. Median age at the time of first manifestation, molecular diagnosis and last follow-up visit was 12.5 (age-range, 2-52years), 18 (age-range, 7-64years) and 22years (age-range, 3-64), respectively. Infections (39%), hematological malignancies (23%) and undefined cytopenia (16%) were the most frequent symptoms at the onset of the disease. The majority of patients (55%) underwent hematopoietic stem cell transplantation. During the follow-up rarer manifestations emerged. The clinical penetrance was highly variable, with the coexistence of severely affected pediatric patients and asymptomatic adults in the same pedigree. Two individuals remained asymptomatic at the last follow-up visit. Our study highlights new (pilonidal cyst/sacrococcygeal fistula, cholangiocarcinoma and gastric adenocarcinoma) phenotypes and show that lymphedema may be associated with null/regulatory mutations. Countrywide studies providing long prospective follow-up are essential to unveil the exact burden of rarer manifestations and the natural history in GATA2 deficiency.

Acute and long-term psychosocial consequences in grandparents when a grandchild is diagnosed with cancer – the GROKids Project: a population-based mixed-methods study protocol

BackgroundGrandparents play a crucial role in providing their families with love, support, and wisdom, often also supporting them in practical and financial ways. The psychosocial effects experienced by grandparents when a grandchild is diagnosed with an illness can be significant, including increased stress, anxiety, grief, and disruptions in their own lives. Yet, the experience of grandparents is often overlooked in the literature.Methods/designThe GROKids Project aims to investigate how grandparents are affected by a grandchild's cancer diagnosis. It employs a mixed-methods approach and consists of three studies: a longitudinal cohort study (Study 1) and a qualitative study (Study 2) involving grandparents of children with a recent cancer diagnosis, and a cross-sectional study (Study 3) of grandparents of childhood cancer survivors. Study 1 covers four time points over two years after the cancer diagnosis, while Study 2 explores the lived experiences of a subsample of these grandparents. Study 3 collects data from grandparents of childhood cancer survivors diagnosed 3 to 10 years ago. Participants are recruited across eight pediatric oncology centers in Switzerland, and through patient advocacy and support groups. Eligibility criteria include having a grandchild diagnosed with cancer and being fluent in German, French, or Italian.Study procedures involve requesting grandparents’ contacts from eligible families, and later contacting grandparents, providing study information, obtaining informed consent, and sending out questionnaires by post or online. Reminder calls and mails are used to improve response rates. Data analysis includes multilevel regression (Study 1), thematic analysis (Study 2), and regression analyses (Study 3). Various validated questionnaires are used to assess physical health and overall well-being, psychological health, internal, and external factors.DiscussionThis project addresses the gaps in understanding the psychosocial effects on grandparents having a grandchild diagnosed with cancer. It utilizes a comprehensive approach, including multiple methodologies and considering the broader family context. The project’s strengths lie in its mixed-methods design, longitudinal approach, and inclusion of the perspectives of the sick children, siblings, and parents, besides grandparents. By gaining a more profound understanding of grandparents' experiences, researchers and healthcare professionals can develop targeted interventions and support services to address grandparents’ unique needs.

Nutrition screening, assessment, and intervention practices for children with cancer in Aotearoa, New Zealand

ObjectiveThe purpose of this study was to investigate dietetic resources and current nutrition screening, assessment, and intervention practices in pediatric oncology centers in Aotearoa, New Zealand. MethodsA national survey of the two specialist treatment centers and 14 shared care centers that provide care to childhood cancer patients in Aotearoa, New Zealand, was conducted. ResultsThe two specialist treatment centers in Aotearoa, New Zealand, were the only centers with a dedicated dietetic oncology full-time equivalent resource; this full-time equivalent resource was devoted to inpatient care. Only 5 shared care centers (44%) had access to general pediatric dietetic support. Dietetic cover for outpatients or day-stay patients and use of standardized nutrition screening and assessment tools were limited. Weight and height were commonly measured, but there was inconsistency in the frequency and recording of measurements. Nutrition interventions, including nutrition education, oral nutrition support, enteral nutrition, and intravenous nutrition, were available within all centers but criteria for initiating support varied. Common barriers to providing nutrition interventions included staff resourcing and ad hoc referral pathways. Awareness of the relevance and clinical benefit of nutrition in pediatric oncology was low. Suggestions to improve nutrition screening, assessment, and intervention within Aotearoa, New Zealand, included the creation of standardized screening and referral criteria. ConclusionsResource limitations and lack of nutritional screening and assessment prevent adequate nutritional intervention for children with cancer in Aotearoa, New Zealand. Akin to other high-income countries, there is a need to harmonize the management of nutritional challenges in children with cancer. This study provides a first step in establishing an evidence base to help support efforts to address this need in Aotearoa, New Zealand.

JS01.4.A CENTRALIZED CRANIOSPINAL PROTON THERAPY FOR MEDULLOBLASTOMA PATIENTS; AN EVALUATION OF THE CARE INFRASTRUCTURE IN THE NETHERLANDS

Abstract BACKGROUND The introduction of proton radiotherapy in the Netherlands resulted in the centralization of proton craniospinal irradiation (pCSI) for patients with medulloblastoma (MB) to a single center. For optimal outcome of MB patients, timely start of pCSI and treatment without interruptions is important. However, national-scale referrals and the complexity of delivering pCSI pose a risk for treatment delays in these patients. Therefore, to aid in high quality care, integration of pCSI within the national pediatric oncology center and collaboration within the Dutch neuro oncology society - rare cancer working group was established. In this study, we evaluated the care infrastructure for pCSI for a nationwide defined MB patient cohort in the Netherlands. MATERIAL AND METHODS All Dutch MB patients referred for pCSI to our center were included in this analysis. The interval between surgery and start of pCSI was calculated, excluding patients who received neo-adjuvant chemotherapy. Overall treatment time, use of (back-up) photon fractions and plan adaptations were evaluated. Data regarding planned and additional multidisciplinary care during pCSI were extracted from the medical records. RESULTS Between February 2018 and December 2022, 79 MB patients, including 25 (32%) adult (&amp;gt;18 years) patients, were treated with pCSI. The median interval between surgery and start of pCSI for pediatric and adult patients was 32 days (IQR 30, 35) and 41 days (IQR 35, 55) respectively, and 91% and 47% started within 40 days from surgery. The median overall treatment time for all patients was 41 days (range 11). The longest treatment interruption was 3 days in one adult patient. Eight patients received a median of 9 photon fractions (IQR 2, 11); most often because of the need to start treatment quickly. In 30% of all patients a plan adaptation was needed, mostly because of changes in patient weight during treatment. In our center, it is considered standard of care to involve the (pediatric) medical oncologist and neurologist during pCSI. Clinical care (hospitalization) was required in 42% of the patients for a median of 10 days. Anesthesia was necessary predominantly for patients aged 8 years and younger. Other (para)medical disciplines involved during pCSI were neurosurgery (6%), neuropsychology (22%), speech therapy (25%), rehabilitation therapy (46%) and nutritional specialist (73%). CONCLUSION The Dutch pCSI infrastructure for MB patients facilitated a timely start of treatment in over 90% of pediatric patients and in nearly half of the adult patients. During pCSI treatment, a well-orchestrated interplay between several (para)medical disciplines is required to provide all potential necessary care. More disciplines were involved and more clinical care was required for pediatric patients. We were able to deliver pCSI treatment with less than 3 days interruption in 98% of patients.

Nursing care approaches to oral mucositis in pediatric oncology clinics: a cross-sectional study from Türkiye.

It is important to determine the approaches for oral mucositis (OM) care in pediatric oncology clinics to reflect the profile of practices. The aim of this study was to report on current nursing care approaches for OM in Türkiye. The descriptive, cross-sectional study was conducted with nurse managers in pediatric oncology centers in Türkiye between April and December 2022. The data were obtained online by reaching pediatric oncology nurse managers. The data was collected with the "Oral Mucositis Care Application Form" developed by the researchers based on current literature. The study reached approximately 60% (n = 41) of pediatric oncology clinics across Türkiye. Oral assessment of children was mainly conducted by nurses (95.1%), and 53.7% of clinics used the WHO Oral Mucositis Assessment Scale. To prevent OM, oral care routines were performed twice a day (36.6%) using sodium bicarbonate (61%) and 0.9% sodium chloride (26.8%) agents. For oral mucositis management, pharmacological agents included glutamine (oral) (51.2%), chlorhexidine (43.9%), and benzydamine hydrochloride (36.6%), while non-pharmacological agents included black mulberry syrup (41.5%), honey (19.8%), and chewing gum (9.8%). Chlorhexidine and benzydamine hydrochloride were used for all mucositis grades, while glutamine was frequently used for grades 2 and above. The study revealed that the practices related to preventing and managing oral mucositis in pediatric oncology clinics in Türkiye are heterogeneous. These findings will contribute to the existing literature on the multidisciplinary, systematic, and evidence-based approaches used in oral mucositis care in Türkiye.

POSTER: ALL-019 Iron Status and Overload in Children With Acute Lymphoblastic Leukemia (ALL) during Different Phases of Therapy in a Pediatric Oncology Center in Egypt

POSTER: ALL-019 Iron Status and Overload in Children With Acute Lymphoblastic Leukemia (ALL) during Different Phases of Therapy in a Pediatric Oncology Center in Egypt

Current Status of Pediatric Oncology Clinics and Nursing Practices in Turkey.

Background: Cancer is a significant health problem in Turkey with pediatric cancer being the fourth leading cause of death among children. Pediatric oncology has been acknowledged as a pediatric subspecialty since 1983, and 3,000 new cases of childhood cancer are expected every year. Method: We describe our country's geography, the number and distribution of pediatric oncology centers, the profile of clinical and academic nurses, and our clinical practice. We present two nurse-led research projects. Results: Although nursing practice differs according to centers, treatment and care are usually evidence-based, especially in university and public hospitals in big cities. Nurses with an undergraduate education work in pediatric oncology units; however, few nurses with graduate degrees work in clinical settings. The Turkish Oncology Nurses Association supports the development and implementation of guidelines for evidence-based nursing care. Nurses' clinical responsibilities include patient admission to the clinic, patient and family education, care coordination, patient care, symptom management, palliative, and intensive care services. Results of two recent nurse-led studies highlight challenges to meet the needs of patients and families from surrounding countries, including refugees, and opportunities for nurses to provide holistic support to parents of hospitalized children. Discussion: Increasing the number of nurses is a priority to improve pediatric oncology nursing care. Actions to advance pediatric oncology nursing include developing advanced clinical roles for nurses with graduate degrees; supporting nurses caring for children and families from outside Turkey, including language support services; and resources to conduct national and international studies related to professional and holistic care delivery.

ALL-019 Iron Status and Overload in Children With Acute Lymphoblastic Leukemia (ALL) during Different Phases of Therapy in a Pediatric Oncology Center in Egypt

ALL-019 Iron Status and Overload in Children With Acute Lymphoblastic Leukemia (ALL) during Different Phases of Therapy in a Pediatric Oncology Center in Egypt

Effect of distance to tertiary centre on enrolment of paediatric patients with relapsed or refractory cancer on early phase clinical trials in British Columbia.

Access to early phase trials for children with relapsed, refractory or progressive (RRPD) cancer is limited in Canada. Patients and families face barriers to access trials, which are poorly understood. The aims of this study were to assess availability of early phase trials and examine the impact of distance from home to study centre on trial enrolment among paediatric oncology patients with RRPD. Oncology patients ≤18 years at diagnosis who later had RRPD were identified retrospectively via registry at the only quaternary paediatric oncology centre in British Columbia (BC). We determined if distance to home, as calculated using geocoding software, was predictive of trial offer or enrolment. Between January 2015 and July 2021, 266 patients experienced 396 RRPD events. Seventy-five patients (28.2%) were eligible for an early phase trial at least once. At first eligible event, 61 patients (22.9%) were offered trial (median age 11.8 years; 69.0% male; 46.0% with CNS tumour) and thirty patients (11.3%) enrolled. Distance was not associated with odds of offer (OR 1.01, CI 0.98 to 1.05) or enrolment (OR 0.99, CI 0.95 to 1.03) on univariate or multivariable analysis adjusted for sex and disease (OR 0.93, CI 0.86 to 1.00). For offered patients, 2-year event-free survival (EFS) and overall survival (OS) were 39.1% (CI 28.0% to 54.8%) and 51.8% (CI 39.9% to 67.2%), respectively. EFS/OS did not differ with distance or enrolment, but varied by disease (EFS P = 0.002, OS P < 0.0001). Children in BC with cancer and RRPD have limited access to early phase trials. Distance was not predictive of enrolment, suggesting that families travel to access therapy.

Long-term outcomes of symptomatic optic pathway glioma: 32-year experience at a single Western Australian tertiary pediatric oncology center.

Optic pathway gliomas (OPGs) are associated with significant risk of visual and endocrine morbidity, but data on long-term outcomes in symptomatic patients is sparse. This study reviews the clinical course, disease progression, survival outcomes and long-term sequelae in pediatric patients with symptomatic OPGs in our institution over three decades. Retrospective review of patients with symptomatic OPG treated in a single tertiary pediatric oncology center from 1984 to 2016. A total of 37 patients were diagnosed with symptomatic OPG. Decreased visual acuity was the commonest presenting symptom (75.7%). Surgical intervention was performed in 62.2%; 56.5% underwent biopsy, 26.1% surgical debulking and 17.4% had orbital decompression with cystic fenestration and cosmetic optic nerve excision at different treatment intervals. CSF diversion was performed in 47.8% patients. Histopathologic examination confirmed 86% to be pilocytic astrocytoma and 1 ganglioglioma. 46% received chemotherapy and 48% had radiotherapy, at different intervals. Median follow-up was 13.74 years. In NF1 patients, overall survival (OS) was 100% at 5 years and 55.6 ± 24.8% at 25 years while progression-free-survival (PFS) was 50 ± 15.8% at 5 and 20 years. In non-NF1 patients, OS was 96.2 ± 3.8% at 5 years and 87.4 ± 9% at 25-years. 5-year PFS was 53.8 ± 9.8% and 25-year PFS was 49.0 ± 10%. Cumulative PFS was 53 ± 8.3% at 5 years and 49.7 ± 8.4% at 20 years while cumulative OS was 97.2 ± 2.7% at 5 years and 77.5 ± 10.8% at 25 years. 59.5% patients developed post-operative endocrinopathy. Long-term vision was normal in 8.1%, improved in 13.5%, stabilized in 40.5% but worsened in 37.8% patients. Three patients treated with radiotherapy developed second brain tumors. 25-year OS in this cohort was 77.5% but survivorship carried significant long-term morbidities including radiation-induced second malignant brain tumors.

Effect of paediatric early warning systems (PEWS) implementation on clinical deterioration event mortality among children with cancer in resource-limited hospitals in Latin America: a prospective, multicentre cohort study

Paediatric early warning systems (PEWS) aid in the early identification of clinical deterioration events in children admitted to hospital. We aimed to investigate the effect of PEWS implementation on mortality due to clinical deterioration in children with cancer in 32 resource-limited hospitals across Latin America. Proyecto Escala de Valoración de Alerta Temprana (Proyecto EVAT) is a quality improvement collaborative to implement PEWS in hospitals providing childhood cancer care. In this prospective, multicentre cohort study, centres joining Proyecto EVAT and completing PEWS implementation between April 1, 2017, and May 31, 2021, prospectively tracked clinical deterioration events and monthly inpatient-days in children admitted to hospital with cancer. De-identified registry data reported between April 17, 2017, and Nov 30, 2021, from all hospitals were included in analyses; children with limitations on escalation of care were excluded. The primary outcome was clinical deterioration event mortality. Incidence rate ratios (IRRs) were used to compare clinical deterioration event mortality before and after PEWS implementation; multivariable analyses assessed the correlation between clinical deterioration event mortality and centre characteristics. Between April 1, 2017, and May 31, 2021, 32 paediatric oncology centres from 11 countries in Latin America successfully implemented PEWS through Proyecto EVAT; these centres documented 2020 clinical deterioration events in 1651 patients over 556 400 inpatient-days. Overall clinical deterioration event mortality was 32·9% (664 of 2020 events). The median age of patients with clinical deterioration events was 8·5 years (IQR 3·9-13·2), and 1095 (54·2%) of 2020 clinical deterioration events were reported in male patients; data on race or ethnicity were not collected. Data were reported per centre for a median of 12 months (IQR 10-13) before PEWS implementation and 18 months (16-18) after PEWS implementation. The mortality rate due to a clinical deterioration event was 1·33 events per 1000 patient-days before PEWS implementation and 1·09 events per 1000 patient-days after PEWS implementation (IRR 0·82 [95% CI 0·69-0·97]; p=0·021). In the multivariable analysis of centre characteristics, higher clinical deterioration event mortality rates before PEWS implementation (IRR 1·32 [95% CI 1·22-1·43]; p<0·0001), being a teaching hospital (1·18 [1·09-1·27]; p<0·0001), not having a separate paediatric haematology-oncology unit (1·38 [1·21-1·57]; p<0·0001), and having fewer PEWS omissions (0·95 [0·92-0·99]; p=0·0091) were associated with a greater reduction in clinical deterioration event mortality after PEWS implementation; no association was found with country income level (IRR 0·86 [95% CI 0·68-1·09]; p=0·22) or clinical deterioration event rates before PEWS implementation (1·04 [0·97-1·12]; p=0·29). PEWS implementation was associated with reduced clinical deterioration event mortality in paediatric patients with cancer across 32 resource-limited hospitals in Latin America. These data support the use of PEWS as an effective evidence-based intervention to reduce disparities in global survival for children with cancer. American Lebanese Syrian Associated Charities, US National Institutes of Health, and Conquer Cancer Foundation. For the Spanish and Portuguese translations of the abstract see Supplementary Materials section.