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Purpose: The aim of this systematic review is to reveal the social, personal, and contextual factors that influence physical activity (PA) in children and adolescents during and after cancer treatment. Method: SPORTDiscus, Cochrane, Web of Science, PubMed, and FIS Education electronic database were systematically searched. Results: The 13 included studies show that social support (parents, siblings, and friends) in particular is rated as important by cancer survivors; for example, doing PA together. Depending on the treatment status and state of health, particularities arise. During the acute treatment phase, parents issued more prohibitions regarding PA than after treatment. The state of health and concern about infections are described as inhibiting factors. Not all hospitals generally offer special exercise programs for cancer patients, and in some cases, only sporadic exercise sessions were conducted by specialized staff. In addition, the hospital atmosphere, such as cramped rooms, tends to be associated with demotivating effects. Conclusions: Both inhibiting and promoting factors in the area of social, personal, and contextual factors could be identified. The most fundamental factor for PA is the physical condition. Social factors, such as parents or friends, often have a motivating effect and can promote PA. Inhibiting factors are mainly context-related, such as an environment unsuitable for PA. Although the review highlights interesting aspects, further treatment-related and longitudinal studies could provide deeper insights. [ABSTRACT FROM AUTHOR]

INTRODUCTION: The incidence of pediatric Wilms tumor (WT) is high in Africa, though patients abandon treatment after initial diagnosis. We sought to identify factors associated with WT treatment abandonment in Uganda. METHODS: A cohort study of patients  25 cm (OR 2.67, 95% CI 1.05-6.81). CONCLUSIONS: Children with WT in Uganda frequently abandon care during neoadjuvant therapy, particularly those with large tumors with poor response. Further investigation into the factors that influence treatment abandonment and a deeper understanding of tumor biology are needed to improve treatment adherence of children with WT in Uganda.

Introduction: Children with cancer experience significant pain and anxiety during needle-based procedures. Undertreated pain in children has long-lasting consequences and reduces the efficacy of subsequent analgesic efforts. A validated quality improvement (QI) intervention, known as the Childrens Comfort Promise, includes (1) topical anesthetics, (2) sucrose or breastfeeding for infants, (3) comfort positioning, and (4) distraction techniques, and has been shown to be highly effective in decreasing procedural pain and anxiety in children. However, there is limited data about the adoption, adaptation, and implementation of these interventions in low- and middle-income countries (LMICs). Methods: A QI pilot project utilizing the Model for Improvement of the Global Comfort Promise was implemented in four global pediatric cancer hospitals (Lima, Peru; Barretos, Brazil; Pietermaritzburg, South Africa; and Manila, Philippines). Between August 2021 and January 2023, the pilot sites identified a specific aim, co-designed the measurement strategy with St. Jude Childrens Research Hospital, and adopted, adapted, and implemented the project at their individual sites. Results: A total of 2,185 different procedures were recorded in the first year of implementation. Most patients were less than 10 years old (60.5%) and solid tumors (37.9%) were the most common diagnosis. Overall, healthcare professionals (98.3%) were satisfied with the procedures. Parents and patients reported that only 33.7% of patients experienced pain during the procedure. All (100%) parents and patients felt the healthcare teams adequately addressed their childs pain. Median self-reported adherence to ≥2 interventions was 98.0%. Challenges to the implementation of the QI initiative included lack of training, turnover of the medical staff, maintaining staff enthusiasm, and access to topical anesthetics. Each site had unique change ideas to implement the initiative. Conclusions: This multi-site, multi-country QI initiative was feasible and was successfully adopted, adapted, and implemented in the LMIC context to improve procedural pain in children (Global Comfort Promise). Additionally, this intervention resulted in high satisfaction of both healthcare professionals and patients/families. Further work is needed to overcome the challenges of topical anesthetic access and education of the workforce. Additional plans include modifying the Global Comfort Promise to include high-quality communication and expanding to additional sites with further refinement of the implementation strategy.

BACKGROUND: Children with relapsed central nervous system (CNS tumors), neuroblastoma, sarcomas, and other rare solid tumors face poor outcomes. This prospective clinical trial examined the feasibility of combining genomic and transcriptomic profiling of tumor samples with a molecular tumor board (MTB) approach to make real‑time treatment decisions for children with relapsed/refractory solid tumors. METHODS: Subjects were divided into three strata: stratum 1-relapsed/refractory neuroblastoma; stratum 2-relapsed/refractory CNS tumors; and stratum 3-relapsed/refractory rare solid tumors. Tumor samples were sent for tumor/normal whole-exome (WES) and tumor whole-transcriptome (WTS) sequencing, and the genomic data were used in a multi-institutional MTB to make real‑time treatment decisions. The MTB recommended plan allowed for a combination of up to 4 agents. Feasibility was measured by time to completion of genomic sequencing, MTB review and initiation of treatment. Response was assessed after every two cycles using Response Evaluation Criteria in Solid Tumors (RECIST). Patient clinical benefit was calculated by the sum of the CR, PR, SD, and NED subjects divided by the sum of complete response (CR), partial response (PR), stable disease (SD), no evidence of disease (NED), and progressive disease (PD) subjects. Grade 3 and higher related and unexpected adverse events (AEs) were tabulated for safety evaluation. RESULTS: A total of 186 eligible patients were enrolled with 144 evaluable for safety and 124 evaluable for response. The average number of days from biopsy to initiation of the MTB-recommended combination therapy was 38 days. Patient benefit was exhibited in 65% of all subjects, 67% of neuroblastoma subjects, 73% of CNS tumor subjects, and 60% of rare tumor subjects. There was little associated toxicity above that expected for the MGT drugs used during this trial, suggestive of the safety of utilizing this method of selecting combination targeted therapy. CONCLUSIONS: This trial demonstrated the feasibility, safety, and efficacy of a comprehensive sequencing model to guide personalized therapy for patients with any relapsed/refractory solid malignancy. Personalized therapy was well tolerated, and the clinical benefit rate of 65% in these heavily pretreated populations suggests that this treatment strategy could be an effective option for relapsed and refractory pediatric cancers. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02162732. Prospectively registered on June 11, 2014.

BackgroundFamilies experience financial burden and household material hardship (HMH) after a pediatric cancer diagnosis. This study investigates types of financial assistance and other financial coping strategies (FCS) adopted by families during the first year after diagnosis.MethodsRetrospective survey of caregivers of pediatric patients diagnosed with cancer from 2015 to 2019. The survey collected data on demographics, diagnosis, income, HMH, and private, hospital, and government assistance received and other FCS adopted after diagnosis. Bivariate and multivariable logistic regressions were used to analyze FCS by income. Subgroup analysis of families experiencing HMH was used to identify predictors of receiving government assistance.ResultsOf 156 respondents, 52% were low-to-middle income, 29% had public insurance, and 22% had non-English language preference. Low-to-middle-income families were more likely to incur debt (odds ratio [OR] 6.24, p

Next-generation sequencing technologies have not only defined a breakthrough in medical genetics, but also been able to enter routine clinical practice to determine individual genetic susceptibilities. Modern technological developments are routinely introduced to genetic analysis overtaking the established approaches, potentially raising a number of challenges. To what extent is the advantage of new methodologies in synthetic metrics, such as precision and recall, more important than stability and reproducibility? Could differences in the technical protocol for calling variants be crucial to the diagnosis and, by extension, the patient's treatment strategy? A regulatory review process may delay the incorporation of potentially beneficial technologies, resulting in missed opportunities to make the right medical decisions. On the other hand, a blind adoption of new technologies based solely on synthetic metrics of precision and recall can lead to incorrect conclusions and adverse outcomes for the specific patient. Here, we use the example of a patient with a WHO-diagnosed desmoplastic/nodular SHH-medulloblastoma to explore how the choice of DNA variant search protocol affects the genetic diagnostics outcome. [ABSTRACT FROM AUTHOR]

Objective: This research aims to explore parents' cognitive beliefs, specifically illness cognitions, in response to their children being diagnosed with cancer. This study is an initial step toward providing regular psychosocial assessment as a standard for psychosocial care for children with cancer and their families in Latvia. Methods: Data were collected from 120 parents (mostly mothers, n = 109) as an initial evaluation of the psychosocial risks faced by families participating in the support program "Holistic and Multidisciplinary Support for Children with Functional Disabilities and Their Family Members," which was managed by the Children's Hospital Foundation at the Children's Clinical University Hospital in Riga (Latvia) from 2020 to 2023. The patients comprised 66 boys and 54 girls (M age = 7.1, SD = 4.7, range: 0–17 years) with diverse cancer diagnoses. The parents completed the Latvian version of the Psychosocial Assessment Tool [adapted from PAT 3.1], with five subscales included in the data analysis (Social Support, Child Problems, Family Problems, Stress Reactions, and Family Beliefs). The Family Belief subscale was adjusted specifically to address the unique objectives and research questions of the current study. Results: Significant correlations were found between children's psychological problems (e.g., getting upset about medical procedures, hyperactivity, excessive use of electronic devices, etc.) and parental stress reactions after diagnosis and with self-reported symptoms of anxiety and depression. The associations were statistically significant, even after controlling for sociodemographic and medical factors such as diagnosis. The relationship between children's problems and parental stress reactions was partly mediated by Family Beliefs about illness. The most informative beliefs associated with parental stress symptoms and the family's psychosocial risk level were identified, and significant results were found according to the main component of beliefs (catastrophic vs. optimistic) that explained 42% of the variance in the Family Beliefs subscale. Implication: Understanding the habitual responses to stress and identifying the thinking patterns of parents that lead to distorted views and maladaptive coping are essential for customizing personalized interventions to enhance treatment compliance. The Latvian version of PAT is a useful psychosocial screening measure in pediatric oncology settings. [ABSTRACT FROM AUTHOR]

Background: The clinical utility of whole genome sequencing (WGS) in paediatric cancer has been demonstrated in recent years. WGS has been routinely available in the National Health Service (NHS) England for all children with cancer in England since 2021, but its uptake has been variable geographically. To explore the underlying barriers to routine use of WGS in this population across England and more widely in the United Kingdom (UK) and the Republic of Ireland (ROI), a one-day workshop was held in Cambridge, United Kingdom in October 2022. Methods: Following a series of talks, delegates participated in open, round-table discussions to outline local and broader challenges limiting routine WGS for diagnostic work-up for children with cancer in their Principal Treatment Centres (PTCs) and Genomic Laboratory Hubs (GLHs). Within smaller groups, delegates answered structured questions regarding clinical capability, education and training needs, and workforce competence and requirements. Data was recorded, centrally collated, and analysed following the event using thematic analysis. Results: Sixty participants attended the workshop with broad representation from the 20 PTCs across the UK and ROI and the seven GLHs in England. All healthcare professionals involved in the WGS pathway were represented, including paediatric oncologists, clinical geneticists, clinical scientists, and histopathologists. The main themes highlighted by the group in ensuring equitable access to WGS identified were: lack of knowledge equity between NHS trusts, with a perception of WGS being for research only; and perception of lack of financial support for the clinical process surrounding WGS, including lack of time to take informed consent from patients. The latter also included limited trained staff available for data interpretation, affecting the turnaround time for reporting. Finally, the need for an integrated digital pathway to order, track, and return data to clinicians was highlighted. Conclusion: At the workshop, the general motivation for including WGS in the diagnostic work up for children with cancer was high throughout the UK, however a perceived lack of resources and education opportunities limit the widespread use of this commissioned assay. This workshop has led to some recommendations to increase access to WGS in this population in England and more widely in the devolved national of the UK and the ROI. [ABSTRACT FROM AUTHOR]

Introduction: Ependymoma is the third most frequent central malignant nervous system tumor in the pediatric age group. There is scarce data in the literature on survival of these patients, especially in upper and lower middle-income countries. We aimed to describe the clinical and demographic characteristics, treatment, and outcome of pediatric patients with ependymoma admitted to a public cancer hospital. Methods: Retrospective analysis of medical records of patients with ependymoma, admitted to the Pediatric Oncology department (0-20 years) during the period of 2000-2022. Data on patient, disease characteristics, and treatment were analyzed. Overall survival (OS) was calculated using the Kaplan-Meier method. Results: Seventy-two patients were evaluated; median age at diagnosis was 6.5 years (range: 1-20), 63% were male, 54% of the tumors were in the posterior fossa (PF-EPN), 45% were classified as WHO grade 3, and 68% were operated on in other institutions before referral. Regarding treatment, 72% underwent radiotherapy and 33% of patients underwent chemotherapy. Almost 70% percent of the patients had relapses. The median follow-up time was 5.2 years (Range: 0,1-21,4). The OS in 5 years was 67%. Totally resected tumors had OS in 5 years of 88% (p: 0.028). Conclusion: The results achieved in this series show a survival gap between UMIC and HIC. Relapses occurred mainly in the first ten years and then reached a plateau, with the majority of patients experiencing endocrinological and neurological sequelae. [ABSTRACT FROM AUTHOR]

Background: Integrating pediatric palliative care (PPC) into pediatric oncology standard care is essential. Therefore, it is important to assess physicians' knowledge and perceptions of PPC to optimize its practice. Objective: To evaluate the knowledge, comfort levels, and perspectives of physicians regarding the timing and perceived barriers to integrating PPC into pediatric cancer care across Europe. Design: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey, originally developed for other global regions, was culturally and contextually adapted for Europe. Setting/Subjects: The survey was distributed via the European Society of Paediatric Oncology (SIOPE) membership listserv. Any physicians caring for children with cancer across Eastern, Southern, Central, and Northern Europe were invited to complete the survey. Results: A total of 198 physicians from 29 European countries completed the ADAPT survey. Physicians demonstrated relative agreement with the World Health Organization's guidance; median alignment was 83.4% (range 59.9%-94.1%). Although most respondents felt comfortable addressing physical (84.4%) and emotional (63.4%) needs, they felt less comfortable addressing spiritual needs (41.9%) and providing grief and bereavement support (48.5%). There were significant regional differences, such as physicians in Eastern and Southern Europe reporting a lack of PPC specialists, opioids, and home-based care, while those in Northern and Central Europe did not. Conclusion: Physicians caring for children with cancer throughout Europe have a good understanding of PPC. However, misconceptions about PPC persist, requiring educational and capacity-building efforts. Additionally, the regional differences in perceived barriers must be addressed to ensure equitable access to PPC for all European children with cancer. [ABSTRACT FROM AUTHOR]

Background: Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to palliative care should be available to children and adults. Yet communication and prognostic disclosure may influence the timing of involvement in palliative care. Purpose: To investigate whether parents perceived that their child received palliative care and to what extent that contrasted parents' perceptions of their child's care and symptoms in the last month of life. Methods: A nationwide population-based parental questionnaire study in Sweden, one to five years after their child's death (n=226). Descriptive statistics were used. Results: A majority of parents (70%) reported that they were aware that their child received palliative care and they were informed about the incurable disease (57%) within 3 months before the child died. The most common diagnosis among children receiving palliative care was a brain tumor (45%) with a disease related death (90%) and the care was often received at home (44%). Based on the reports of parents who felt that their child did not receive palliative care, 45% were informed within days or hours about the child's incurable disease, 45% of these children were diagnosed with leukemia, 60% died at the intensive care unit, and 49% died of treatment-related complications. It was most common for families who lived in urban areas (28%) to report their child received palliative care, in comparison to families living in sparsely populated areas (11%). A significant proportion of parents whose child received palliative care (96%) stated that the healthcare professionals were competent in caring for their child, for those who reported no palliative care it was slightly lower (74%). In both groups many children were affected by multiple symptoms the last month of life. Conclusions: The study findings highlight the role of understanding parental perceptions of pediatric palliative oncology care, the role of initiating palliative care early, the need of access to national equitable PC and professional competence across the lifespan, regardless of diagnosis and place of residence. [ABSTRACT FROM AUTHOR]

Introduction: Optimal outcomes during childhood cancer treatment require effective management of toxicities, often called supportive care. A lack of agreement on what comprises supportive care limits the development and provision of comprehensive guidance (for this work, we have defined supportive care as any disease‐ or treatment‐related condition experienced by children with cancer, excluding psychosocial conditions, palliative care, survivorship, or procedural topics). To address this gap, we conducted a consensus‐building exercise among global experts to define and prioritize topics for supportive care. Methods: Two rounds of brainstorming and prioritization exercises were conducted. A multidisciplinary panel nominated by professional societies and cooperative groups was formed to ensure geographic and resource representation using snowball sampling. An internal expert panel generated an initial list of supportive care topics. In round one, the multidisciplinary panel reviewed the initial list and recommended additional topics, followed by prioritization in round two using a seven‐point Likert scale. Results were summarized using descriptive statistics. Results: The multidisciplinary panel consisted of 57 members representing 32 countries. The initial list included 46 topics; 161 additional topics were suggested. After removing duplicates and out‐of‐scope additions, the final list contained 62 topics. Febrile neutropenia, sepsis, bloodstream infections, and pain were ranked highest priority. Mortality, morbidity, and frequency of the event were identified as the most important factors influencing prioritization. Conclusion: Through a multidisciplinary and globally representative process, we identified core supportive care topics and factors influencing their prioritization for childhood cancer. Outputs from this work will inform efforts to generate resource‐adapted recommendations for a global audience. This supports ongoing WHO CureAll work to develop a health systems‐level policy brief of supportive care requirements in the management of children with cancer. [ABSTRACT FROM AUTHOR]

Simple Summary: There has been little improvement in Ewing sarcoma survival rates over the past several decades and new therapeutic options are desperately needed. Histone deacetylases (HDACs) are known to play a role in cancer development and progression. We show that HDAC2 is overexpressed in Ewing sarcoma cells and that an HDAC inhibitor, Panobinostat, is cytotoxic to Ewing sarcoma cells both alone and when combined with standard of care. Mechanistically, we show that Panobinostat increases the DNA damage caused by standard of care leading to the death of the Ewing sarcoma cells. We believe that HDAC inhibition combined with standard-of-care chemotherapeutics may be an effective treatment option for Ewing sarcoma patients. Background: The survival rate of patients with Ewing sarcoma (EWS) has seen very little improvement over the past several decades and remains dismal for those with recurrent or metastatic disease. HDAC2, ALK, JAK1, and CDK4 were identified as potential targets using RNA sequencing performed on EWS patient tumors with the bioinformatic analysis of gene expression. Methods/Results: The pan-HDAC inhibitor Panobinostat was cytotoxic to all the Ewing sarcoma cell lines tested. Mechanistically, Panobinostat decreases the expression of proteins involved in the cell cycle, including Cyclin D1 and phospho-Rb, and DNA damage repair, including CHK1. Further, Panobinostat induces a G1 cell cycle arrest. The combination of Panobinostat with Doxorubicin or Etoposide, both of which are used as standard of care in upfront treatment, leads to a synergistic effect in EWS cells. The combination of Panobinostat and Doxorubicin induces an accumulation of DNA damage, a decrease in the expression of DNA damage repair proteins CHK1 and CHK2, and an increase in caspase 3 cleavage. The addition of Panobinostat to standard-of-care chemotherapy combinations significantly reduces cell viability compared to that of chemotherapy alone. Conclusions: Overall, our data indicate that HDAC2 is overexpressed in many EWS tumor samples and HDAC inhibition is effective in targeting EWS cells, alone and in combination with standard-of-care chemotherapy agents. This work suggests that the addition of an HDAC inhibitor to upfront treatment may improve response. [ABSTRACT FROM AUTHOR]

Background: Red blood cell (RBC) transfusions play an important role in supportive care in children and neonates with cancer. However, in current clinical practice, evidence-based recommendations are lacking on when to administer prophylactic RBC transfusions. To address this gap, a clinical practice guideline (CPG) was developed to systematically review the available evidence and provide recommendations for clinicians. Methods: A systematic literature review in three databases was conducted. The GRADE methodology was used to assess, extract, and summarize the evidence. A multidisciplinary panel of 21 professionals was assembled to ensure comprehensive expertise. If there was insufficient evidence in children with cancer, additional evidence was gathered in general pediatric or adult oncology guidelines, or the panel utilized shared expert opinion to develop a comprehensive CPG. Multiple in-person meetings were conducted to discuss evidence, complete evidence-to-decision frameworks, and formulate recommendations. Results: Four studies including 203 children with all types of cancer, met the inclusion criteria. The expert panel assessed all evidence and translated it into recommendations. In total, 47 recommendations were formulated regarding RBC transfusions in children and neonates with cancer. For instance, specific thresholds for prophylactic RBC transfusions were recommended for children and neonates with cancer who have sepsis, are on ECMO, or are undergoing radiotherapy. Conclusion: This clinical practice guideline presents evidence-based recommendations regarding RBC transfusions in children and neonates with cancer. By providing these recommendations, we aim to guide clinicians and contribute to improving outcomes for children and neonates with cancer. [ABSTRACT FROM AUTHOR]

Objective: To describe the experience of implementing social robotics as an adjuvant during the hospitalization process in pediatric oncology patients. Methods: Before and after cohort study, applying an intervention with the Lego Mindstorms EV3 kit in patients between 8 and 17 years old that are hospitalized with a cancer diagnosis. We excluded patients from the intensive care unit or when their treating physician recommended so. The intervention consisted of a three-phase workshop: an open architecture story, building a car robot using the Lego Mindstorm EV3 kit, and cooperative playing activities such as races and passing obstacles. Results: Thirteen patients received the intervention with robotic lego. The median age was 15 years (IQR = 3), and 84.6% of the population (n = 11) were male. We found significant improvement in the language (topic management p =.011 and communicative intention p =.034). Other characteristics improved, but not significantly (self-care activities index, catching). No adverse events occurred during the intervention. Conclusions: The results of this pilot study suggest that implementing social robotics during hospitalization in children with cancer is a therapeutic adjuvant and safe intervention that promotes better communication, self-care, and a physical activity improvement. For future studies, the impact of this intervention could be measured in hospitalized pediatric cancer patients. [ABSTRACT FROM AUTHOR]

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

Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's death. To examine the association between communication and prolonged grief among parents whose child died from cancer and to explore the mediation effect of preparation for EOL care. We analyzed data from a cross-sectional survey of parents of children who died from cancer in the prior 6-24 months. We used multiple linear regression to examine the association between communication variables and prolonged grief symptoms. We also examined how preparation for EOL mediates these associations. Across N = 124 parents, the mean age was 46 years, 82% were White, and 64% were mothers. The average PG-13 sum score was 32.7 ± 10.6 (range 11-55, with higher scores indicating greater symptom severity). Most parents reported "very good/excellent" communication with clinicians (80%), adequate prognostic information (64%), and high levels of trust (90%). Nearly 39% of parents reported feeling "not at all prepared" for their child's EOL. Compared to parents who wanted more prognostic information, parents who perceived prognostic information to be adequate had significantly lower PG-13 sum scores (36.4 ± 10.8 vs. 30.5 ± 10.1, F = 9.26, P = 0.003). Preparation for EOL fully mediated this association. Early bereaved parents report severe prolonged grief symptoms. Interventions focused on providing adequate prognostic information and improving preparation for EOL may mitigate parental prolonged grief symptoms in the first two years of their bereavement. [ABSTRACT FROM AUTHOR]

Introduction: Childhood cancers as a group affect around 1 in 500 children but each individual diagnosis is a rare disease. While research largely focuses on improving cure rates, the management of side effects of treatment are high priority for clinicians, families and children and young people. Areas covered: The prevention and efficient management of infectious complications, oral mucositis, nausea and vomiting and graft-vs-host disease illustrated with examples of implementation research, translation of engineering to care, advances in statistical methodologies, and traditional bench-to-patient development. The reviews draw from existing systematic reviews and well conducted clinical practice guidelines. Expert opinion: The four areas are driven from patient and family priorities. Some of the problems outlined are ready for proven interventions, others require us to develop new technologies. Advancement needs us to make the best use of new methods of applied health research and clinical trial methodologies. Some of the greatest challenges may be those we're not fully aware of, as new therapies move from their use in adult oncological practice into children. This will need us to continue our collaborative, multi-professional, multi-disciplinary and eclectic approach. [ABSTRACT FROM AUTHOR]

Background: Adaptation of evidence-based interventions (EBIs) often occurs when implemented in new local contexts and settings. It is unclear, however, during which phase of implementation adaptations are most frequently made and how these changes may impact the fidelity, effectiveness, and sustainability of the EBI. Pediatric Early Warning Systems (PEWS) are EBIs for early identification of deterioration in hospitalized children with cancer. This study evaluates adaptations of PEWS made among resource-variable pediatric oncology hospitals in Latin America implementing and sustaining PEWS. Methods: We conducted a cross-sectional survey among pediatric oncology centers participating in Proyecto Escala de Valoración de Alerta Temprana (EVAT), a collaborative to implement PEWS. Adaptations to PEWS were assessed via 3 multiple choice and 1 free text question administered as part of a larger study of PEWS sustainability. Descriptive statistics quantitatively described what, when, and why adaptations were made. Qualitative analysis of free text responses applied the Framework for Reporting Adaptations and Modifications Expanded (FRAME) to describe respondent perspectives on PEWS adaptations. Results: We analyzed 2,094 responses from 58 pediatric oncology centers across 19 countries in Latin America. Participants were predominantly female (82.5%), consisting of nurses (57.4%) and physicians (38.2%) who were PEWS implementation leaders (22.1%) or clinical staff (69.1%). Respondents described multiple PEWS adaptations across all implementation phases, with most occurring during the planning and piloting of EBIs. Adaptations included changes to PEWS content (algorithm, scoring tool, terminology, and use frequency) and context (personnel delivering or population). Respondents felt adaptations streamlined monitoring, enhanced effectiveness, improved workflow, increased comprehension, and addressed local resource limitations. Qualitative analysis indicated that most adaptations were categorized as fidelity consistent and planned; fidelity inconsistent adaptations were unplanned responses to unanticipated challenges. Conclusion: Adaptations made to PEWS across implementation phases demonstrate how EBIs are adapted to fit dynamic, real-world clinical settings. This research advances implementation science by highlighting EBI adaptation as a potential strategy to promote widespread implementation and sustainability in hospitals of all resource levels. [ABSTRACT FROM AUTHOR]

Simple Summary: Appendiceal neuroendocrine neoplasms are very rare in pediatric populations; thus, there are no common guidelines or consensus for the management in children and adolescents, and adult protocols are usually adopted. In the present study, we report on 17 patients that underwent appendectomy for appendicitis with incidental diagnosis of a neuroendocrine tumor revealed upon histologic examination. Patients' characteristics, tumor histology, follow-up and outcome are described and compared to data from the literature, with similar results being reported in various studies. Analysis of previous scientific publications on children with appendiceal neuroendocrine neoplasms was performed and recommendations for treatment and follow-up were reviewed. This tumor displays benign behavior and an excellent outcome in children and adolescents; thus, many authors agree that aggressive surgery after the patient's first appendectomy is not necessary and follow-ups can be reduced. Background/Objectives: Appendiceal neuroendocrine neoplasms (ANENs) are usually found incidentally during histology examination after appendectomy for appendicitis. Due to their rarity in pediatric populations, there is no consensus on treatment or follow-up. The analysis of patients with ANENs of our and other studies will increase the understanding of this tumor. Methods: Pediatric patients with ANENs were uniformly managed at our center between 1998 and 2023. Patients' presenting symptoms, surgery, tumor histology, post-surgical work-up, follow-up and outcome were analyzed. Results: Our report describes 17 patients with a diagnosis of ANEN after appendectomy. The median age was 14 years (range of 4–17 years). Tumors were located at the tip of the appendix in 58.8% of cases and only one had a diameter >1 cm. All were well-differentiated tumors with free resection margins. The submucosa was invaded in five cases, muscularis propria in eight and subserosa in four. Post-appendectomy work-up included tumor marker measurement, abdominal ultrasound and computed tomography or magnetic resonance imaging, chest X-ray and octreotide scintigraphy. No residual tumors or metastases were detected. Additional surgery was not necessary. Follow-up was carried out for a median duration of 6 years (range of 1–10 years). Only one patient was lost to follow-up and all other patients are alive without tumor recurrence. Conclusions: The tumor characteristics of our patients confirmed data from the literature. With the lack of a sufficient number of large prospective trials, it is important to add more information to confirm the benign nature and excellent outcome of this tumor, even without additional surgery. Consensus guidelines are needed for ANENs in pediatric populations. [ABSTRACT FROM AUTHOR]

Embedding precision medicine in paediatric oncology shows promise to have a positive impact on how children with cancer will be treated in the future. While there are a number of studies of precision medicine in childhood cancer, there is limited evidence available on the cost of implementing the related testing. This is the first Australian study that systematically measures the cost of using precision medicine in the care of high-risk childhood cancers, through the Zero Childhood Cancer Precision Medicine Programme. In 2021 Australian dollars, the estimated costs inclusive of genomic and preclinical testing were: (A) $12,743 per patient for access; (B) $14,262 per identification of molecular cause; and (C) $21,769 per MTB recommendation. The information gained supports the understanding of the cost of reporting clinically significant outcomes relevant to the biology of the tumour, diagnosis, prognosis and potentially improving clinical management for a child. [ABSTRACT FROM AUTHOR]

Neurofibromatosis type 1 (NF1) is an autosomal dominant cancer predisposition syndrome characterized by the development of both central and peripheral nervous system tumors. Low-grade glioma (LGG) is the most prevalent central nervous system tumor occurring in children with NF1, arising most frequently within the optic pathway, followed by the brainstem. Historically, treatment of NF1-LGG has been limited to conventional cytotoxic chemotherapy and surgery. Despite treatment with chemotherapy, a subset of children with NF1-LGG fail initial therapy, have a continued decline in function, or recur. The recent development of several preclinical models has allowed for the identification of novel, molecularly targeted therapies. At present, exploration of these novel precision-based therapies is ongoing in the preclinical setting and through larger, collaborative clinical trials. Herein, we review the approach to surveillance and management of NF1-LGG in children and discuss upcoming novel therapies and treatment protocols. [ABSTRACT FROM AUTHOR]

This study aimed to determine the predictive power of religious coping of parents of children with cancer on caregiver burden, depression, anxiety, and stress in Turkey. It was designed as a descriptive and cross-sectional study, utilizing correlational analysis and regression models to explore associations between variables. Data were collected from 164 parents in the pediatric hematology-oncology clinics of a university hospital between November 2023 and March 2024. There was a negative correlation between caregiver burden score and negative and positive religious coping scores. Caregiver burden scores were positively correlated with depression, anxiety, and stress scores. Results indicated that caregiver burden, education level, employment status, family structure, family income, and age at diagnosis significantly predicted positive religious coping. For negative religious coping, caregiver burden, education level, family structure, and family income were significant predictors. This suggests that religious coping may help reduce caregiver burden, underscoring the importance of promoting constructive coping strategies to support caregivers' well-being. [ABSTRACT FROM AUTHOR]

Objective: In childhood cancers, parents are affected psychologically as well as children. We aimed to evaluate the effect of childhood cancer type and stage, as well as elapsed time from diagnosis, on the anxiety and stress indicators among parents. Materials and Methods: Patients aged between 0–18 years and diagnosed with cancer who were receiving chemotherapy (0–1 month, 1–6 month, 6–12 month) and completed treatment were included. Parents of those children (mother or father) who agreed to participate this study were also included. The personal information form and three psychological assessment scales (Beck Hopelessness Scale (PSS), Psychological Resilience Scale (PRS), Uncertainty Intolerance Scale (IUS)) were used for assessment of mental health of the parents. Scores of the scales and clinical features of the children with cancer were compared statistically. Results: The study included 84 parents (57 mothers, 27 fathers) and 84 children. The rate of children with solid tumors was 60% (n:50) and 40% of them were metastatic, which means advanced stage. The rate of the children with leukemia was 40% (n:34) and 23% of them were in high-risk group. According to the type (leukemia vs. solid tumors) and stage (high risk/advanced stage vs. others) of the cancer, there was no statistical difference among parents in the psychological scales (p > 0.05). Additionally, results of the psychological scales showed no significant difference between mothers and fathers (p > 0.05). The hopelessness scores are significantly higher among parents whose child's treatment is terminated compared with those whose active therapy is ongoing, and resilience scores are higher among parents who have less than 1 month since diagnosis of childhood cancer than later periods. Conclusions: The regular assessment of mental health among parents of children with cancer across all the survivorship trajectory: at the time of diagnosis, during active therapy, and after treatment. [ABSTRACT FROM AUTHOR]

Introduction Pain in pediatric oncology patients is often undertreated due to a lack of timely assessment and inefficient communication between health care workers. Improper pain assessment is a leading cause of poorly managed pain in children. In high-income countries, pediatric oncology nurses play a key role in developmentally appropriate pain assessment measures to identify potential management strategies. However, nurses in low- and middle-income countries (LMICs) face a deficit of knowledge about pain assessment tools and management. Owing to differences in availability of resources, a disparity exists between health-related quality of life of cancer patients treated at public- and private-sector hospitals in Pakistan. Methodology The Indus Hospital and Health Network partnered with nine publicsector hospitals nationwide to improve pediatric oncology practices. Supported by the My Child Matters grant, training sessions were conducted for nurses at each publicsector pediatric oncology unit (POU) from March to December 2021. Pain assessment tools were provided. To assess retention and implementation of practices, a knowledge, attitudes, and practices questionnaire was distributed online to nurses at each POU. All responses remained anonymous. Results Fifty-four responses were recorded, 85% were female and most were between 26 and 30 years of age. Most of the participants held a diploma in nursing and were designated charge nurses with more than 6 years of experience. Forty nurses reported routinely assessing pain; the most common reason for not doing so was increased workload. Correlations were observed between routinely performing pain assessment and the number of patients per nurse, availability of formal credentialing or certifications at the institution and routinely performing pain assessment, availability of trainings focused on pain assessment and routinely performing pain assessment, and qualification of nurses and knowledge of nonpharmacological pain assessment methods. Conclusion Strategies to improve pain assessment knowledge and practices among pediatric oncology nurses in LMICs must be developed to improve patient care and clinical outcomes. [ABSTRACT FROM AUTHOR]

Background: Compassion is a crucial aspect in the management of pediatric oncology patients as it has the potential to enhance nurse satisfaction levels, thereby further enhancing the quality and safety of the care they deliver. This study aimed to investigate nurses' understanding and experience of compassionate care when working in pediatric oncology departments. Methods: This research utilized a qualitative descriptive design. Content analysis was used to make sense of data collected via individual and semi-structured interviews conducted with nurses (n = 32) working in pediatric oncology departments. Results: Nurses' understanding of compassionate care for children with cancer was organized into two categories: Humanistic compassionate care and compassionate end-of-life care. The humanistic compassionate care category comprised of three subcategories: (1) empathy, (2) altruism, and (3) respect for the cultural values and beliefs of the family. The compassionate end-of-life care category comprised of two subcategories: (1) facilitating parents' presence at the child's bedside and (2) creating suitable conditions for accepting the death of a child. Conclusion: Compassionate care for children with cancer is marked by a strong emphasis on humanistic, cultural, and end-of-life considerations. Our findings further emphasize the paramount importance of taking families' presence, wishes and beliefs into consideration within this context. [ABSTRACT FROM AUTHOR]

High-dose chemotherapy (HDC) followed by autologous stem cell transplantation (ASCT) improves the prognosis in pediatric patients with several solid tumors and lymphomas. Little is known about the reconstitution of the immune system after ASCT and the influence of CD34+ cell selection on the reconstitution in pediatric patients. Between 1990 and 2001, 94 pediatric patients with solid tumors and lymphomas received autologous CD34+ selected or unmanipulated peripheral stem cells after HDC. CD34+ selection was carried out with magnetic microbeads. The absolute numbers of T cells, B cells and natural killer (NK) cells were measured and compared in both groups at various time points post-transplant. Recovery of T cells was significantly faster in the unmanipulated group at day 30, with no significant difference later on. Reconstitution of B and NK cells was similar in both groups without significant differences at any time. The CD34+-selected group was divided into patients receiving less or more than 5.385 × 106/kg CD34+ cells. Patients in the CD34+ high-dose group displayed significantly faster reconstitutions of neutrophiles and lymphocyte subsets than the CD34+ low-dose group. Engraftment and reconstitution of leukocytes, B cells and NK cells after transplantation of CD34+ selected stem cells were comparable to that in patients receiving unmanipulated grafts. T-cell recovery was faster in the unmanipulated group only within the first month. However, this delay could be compensated by transplantation of >5.385 × 106 CD34+ cells/kg. Especially for patients receiving immunotherapy after HDC large numbers of immune effector cells such as NK and T cells are necessary to mediate antibody-dependent cellular cytotoxicity. Therefore, in patients receiving autologous CD34+-selected grafts, our data emphasize the need to administer high stem cell counts. [ABSTRACT FROM AUTHOR]

Background Despite high long-term survival rates, pediatric low-grade gliomas (pLGGs) are linked with significant tumor- and treatment-associated morbidities that may persist throughout life. The aims of this descriptive cross-sectional pilot study were to characterize health conditions among a cohort of patients with pLGG and explore the feasibility of quantifying disease burden and healthcare resource utilization (HRU). Methods Optum® Market Clarity Data were used to identify patients aged ≤18 years with an ICD-10 code for brain neoplasm, ≥1 physician notes, and with evidence of pLGG recorded between January 1, 2017 and June 30, 2018. Outcomes including health characteristics, HRU, medications, and procedures were assessed at 6-month intervals over 36 months. Results One hundred and fifty-four patients were identified with pLGG and over half experienced headache/migraine, respiratory infection, pain, or behavioral issues during the 36-month study period. The most common comorbidities were ocular/visual (including blindness), mental health disorders, seizures, and behavioral/cognition disorders. Most symptoms and comorbidities persisted or increased during the study period, indicating long-term health deficits. HRU, including speciality care visits, filled prescriptions, and administered medications, was common; 74% of patients had prescriptions for anti-infectives, 56% antiemetics, and 52% required pain or fever relief. Sixty-five percent of patients underwent treatment to control their pLGG, the most common being brain surgery. Little decline was observed in medication use during the study period. Conclusions Patients with pLGG have complex healthcare needs requiring high HRU, often over a long time. Patients need to be optimally managed to minimize disease- and treatment-related burden and HRU. [ABSTRACT FROM AUTHOR]

Purpose: Malnutrition is common in children with cancer. While multiple validated malnutrition screens exist, there is no universal, standardized approach to screen or diagnose malnutrition. The Multinational Association of Supportive Care in Cancer (MASCC) Pediatric Study Group is focused on oncologic supportive care for children and young adults. This subgroup designed and administered a pilot study to characterize global malnutrition screening, diagnosis, and treatment practices for pediatric patients with cancer after identifying variations in malnutrition practice patterns within its members. Methods: A novel, exploratory survey was iteratively developed and distributed in early 2020 to 45 MASCC Pediatric Study Group members. The survey included multiple questions with standard patient presentations and nutritional scenarios, and the respondents selected the answer that best reflected the care patients would receive at their institution. Results: A validated screening tool to assess for malnutrition was routinely used by 15 of 26 respondents (58%). No single validated screen was used by more than 24% of responders, and 11 of 26 (42%) reported not having a standard malnutrition treatment screen. When the same patient was presented with the survey using different malnutrition indicators, patient care plans varied greatly. This was particularly true for z-scores compared to weight percentiles. Conclusions: Development of consensus recommendations for screening practices, preferred malnutrition indicators, and treatment guidelines could help reduce the underdiagnosis of malnutrition and subsequent variation in its management and ought to be a focus of the global pediatric cancer supportive care community. [ABSTRACT FROM AUTHOR]

Scarce data is available regarding primary immunodeficiency-associated cancers in children in low-middle-income countries. This study aimed to determine the incidence, clinical features and outcomes of primary immunodeficiencies (PIDs)-associated cancers in children presenting to Pakistan's largest public-sector specialised pediatric oncology center. Among 5,748 children with cancers registered over 5 years, only eight patients were found to have PID-associated pediatric malignancies with an incidence of 1.4 per 1,000 cases. The median age at the time of diagnosis was 6.5 years with a male-to-female ratio of 7:1. Only four types of PIDs were found to be associated with cancer in children at our center: Ataxia Telangiectasia in 37.5% (n = 3), hyper-IgE syndrome and IgG deficiency in 25% (each n = 2) and one case (12.5%) of common variable immune deficiency. Six different types of pediatric cancers were associated with PID with a predisposition towards hematological malignancies (n = 7, 87.5%). Only two patients (25%) survived. The median survival of the cohort was 3.5 months. Infection-related mortality was the cause of death in four patients (66%), and the type of PID was the only statistically significant factor associated with the outcome. It is concluded that a lesser proportion of PID-associated pediatric cancers are found in our center as compared to the reported data from high-income countries. PID-associated cancers in children have an abysmal prognosis and infection- related mortality is the major cause of treatment failure. Sensitisation of oncologists to look for any underlying PID, the introduction of PID-screening programs in children and consideration of PID-associated malignancies as a high-risk group for treatment may help improve the outcomes. [ABSTRACT FROM AUTHOR]

Parents of children with cancer provide paediatric palliative care (PPC). However, the activities they perform remain underexplored, especially in low- and middle-income countries (LMICs) where the care heavily relies on family involvement. The aim of this study is to identify parental PPC tasks and intentions to perform PPC tasks and to determine their associated factors. A quantitative cross-sectional descriptive design was used to recruit parents of children with cancer from three major paediatric oncology centres in Lebanon. Data were collected through structured interviews using an adapted questionnaire. The statistical analyses included descriptive, bivariate and regression analyses of PPC tasks and intentions. One hundred and five participants completed the study. On average, parents performed 22 PPC activities. The findings suggested statistically significant associations of the number of PPC tasks with the participants' marital status, number of people living with the child, the intentions to perform the tasks and the number of the child's symptoms in the previous week. Examining parents' tasks in PPC in LMICs, such as Lebanon, enhances knowledge of PPC practice in these regions and informs improvement strategies. These results promote PPC understanding, highlight factors influencing PPC delivery and provide a useful measure of PPC tasks performed by parents of children with cancer. [ABSTRACT FROM AUTHOR]

The Société Internationale d'Oncologie Pédiatrique [International Society of Paediatric Oncology] (SIOP), founded in 1969, aims to improve the lives of children and adolescents with cancer through global collaboration, education, training, research and advocacy. The annual congress provides the opportunity to share late-breaking research, clinical experiences and debate, with experts worldwide. SIOP's six Continental Branches represent their constituent members in North America, Oceania, Latin America, Africa, Europe and Asia and bring best practices and recent research findings of value to their specific patient populations. In 1990, the SIOP Board of Directors addressed the formerly predominantly European/North American society transforming into a global association by establishing a scholarship program to bring low- and middle-income country (LMIC) paediatric oncologists and nurses to SIOP meetings. A major achievement was SIOP's acceptance as a World Health Organisation (WHO) non-state actor in official relations in 2018, joining 220 non-governmental organisations, international business associations and philanthropic foundations with this privilege. SIOP supports advocacy with WHO member states and civil society to highlight the specific needs of cancer in this age-group through key programs especially supporting the WHO Global Initiative for Childhood Cancer. Sustained improvement in childhood cancer outcomes has paralleled the integration of research with care; thus, SIOP launched a Programme for Advancing Research Capacity for funding selected clinical trial groups in LMICs. SIOP supports south-south partnerships, and the principles elegantly expressed in SIOP Africa's checklist for co-branding projects, that include the prioritisation of local needs, cultivation of local expertise and commitment to equitable partnerships. SIOP now counts approximately 3,000 members from over 128 countries; 39% are from more than 60 LMICs. SIOP members have multidisciplinary expertise on all aspects of childhood cancer care working in collaboration with key stakeholders including governments, civil society organisations and funders to improve the lives of children/adolescents with cancer everywhere in all ways. [ABSTRACT FROM AUTHOR]

The WHO Eastern Mediterranean region (EMR) is characterised by highly economically diverse countries, with healthcare systems in various phases of development. Childhood cancer care provision also ranges from that provided in centres able to deliver sophisticated therapy resulting in outcomes comparable to those seen in highly developed nations, to countries with no provision for care of children with cancer. At 10·1 per 100,000 children at risk, the age standardised incidence-rate for cancer in children below 14 years of age is relatively low but may be consequent to poor registration. Shortages in trained care providers were identified in many regional countries, particularly in low and lower-middle income countries, however, implementation of training programs are beginning to counter this deficit. Significant diversity in patient care capacity exists in the region, leading to inequitable access to quality paediatric oncology care. There is strong potential for regional collaboration towards infrastructure and capacity improvement, with facilities available within the EMR for twinning and educational support to those centres and countries that need them. While cancer care coverage is available to citizens of high-income countries, in the lower-income countries out-of-pocket health expenditure can reach 75%. Some relief is achieved through the contribution of multiple charitable foundations working to support childhood cancer care in the region, as well as the provision of care in, often overburdened, public sector hospitals. War and other geo-political turmoil, as well as natural disasters, have negatively impacted healthcare capacity, including childhood cancer care, in several regional countries. Despite all this, the trajectory for change is upward and initiatives such as the WHO Global Initiative for Childhood Cancer are igniting positive change. [ABSTRACT FROM AUTHOR]

Childhood cancer is an urgent priority in Egypt, owing to a large number of children with cancer, the great need and demand for paediatric oncology services, limited resources/ funds and inferior survival outcomes. Therefore, an overview of the status of childhood cancer care in Egypt and an evidence-based approach towards optimal utilisation of resources/funds to improve this care are needed. This paper summarises key evidence about childhood cancer care and outcomes in Egypt. We conducted a narrative literature review using a structured search strategy of the MEDLINE database through the PubMed interface. All relevant evidence was summarised under five main sub-topics: (1) burden of childhood cancer in Egypt; (2) treatment approaches; (3) health outcomes; (4) costs and cost-effectiveness of treatment; and (5) barriers and facilitators to optimal childhood cancer care. We found high estimates of disease burden of childhood cancer in Egypt. Furthermore, childhood cancer treatment in Egypt is based on either implementing intensity- regulated protocols or adopting international protocols with or without adaptations to local contexts, leading to varying standards of care among the different treating centres. Limited data about the survival outcomes, costs and cost-effectiveness of treatment exist, although high-quality data from retrospective cohort studies were published from a large paediatric oncology centre (Children's Cancer Hospital Egypt--57357). As Egypt joins the WHO Global Initiative for Childhood Cancers as a focus country, it is prepared to move towards streamlining national efforts to implement a national childhood cancer plan to advance care, improve health outcomes and optimise resource use. Through these efforts, Egypt could become a beacon of hope and a role model to other low- and middle-income countries seeking to improve their childhood cancer care. [ABSTRACT FROM AUTHOR]

Haiti is a low-income country with one of the lowest human development index rankings in the world. Its childhood cancer services are provided by a single hospital with the only dedicated paediatric oncology department in the country. Our objective was to assess the cost and cost-effectiveness of all types of childhood cancer in Haiti to help prioritise investments and to support national cancer control planning. All costing data were collected from the year 2017 or 2018 hospital records. Costs were classified into 11 cost categories, and the proportion of the overall budget represented by each was calculated and converted from Haitian Gourde to United States dollars. The 5-year survival rate was retrieved from hospital records and used to calculate the cost-effectiveness of disabilityadjusted life year (DALY) averted, using a healthcare costing perspective. Additional sensitivity analyses were conducted accounting for late-effect morbidity and early mortality and discounting rates of 0%, 3% and 6%. The annual cost of operating a paediatric oncology unit in Haiti treating 74 patients with newly diagnosed cancer was $803,184 overall or $10,854 per patient. The largest cost category was pharmacy, constituting 25% of the overall budget, followed by medical personnel (20%) and administration (12%). The cost per DALY averted in the base-case scenario was $1,128, which is 76% of the gross domestic product per capita, demonstrating that treating children with cancer in Haiti is very cost-effective according to the World Health Organisation Choosing Interventions that are Cost-Effective (WHO-CHOICE) threshold. In the most conservative scenario, the cost per DALY averted was cost-effective by WHO-CHOICE criteria. Our data will add to the growing body of literature illustrating a positive return on investment associated with diagnosing and treating children with cancer in even the most resource-limited environments. We anticipate that these data will aid local stakeholders and policymakers when identifying cancer control priorities and making budgetary decisions. [ABSTRACT FROM AUTHOR]

Purpose We aimed to document the acceptability (enrollment rate) and feasibility (phone call delivery rate) of implementing a behavioral PA intervention over 12 weeks, in addition to documenting its effects on patient-reported outcomes and physical functioning. This study also describes the costs of carrying out a behavioral PA intervention. A total of 40 participants were randomized in a 1:1 ratio. The tailored behavioral PA intervention was developed based on the most recent PA guidelines in pediatric oncology and on the COM-B framework to enact PA behavior changes. The prescription (frequency, intensity, time and type (FITT)) was adjusted each week during the weekly support calls. The control group did not receive the intervention. 26 males and 14 females (13.6 years old on average and 2.9 years post-cancer treatment on average) participated in our study. The acceptability rate was 90.9% and the feasibility rate was > 85%. We found that 85% improved PA frequency, 80% improved PA intensity, 100% improved PA time, and 50.0% achieved the recommended PA guidelines. No adverse events were reported over the duration of the intervention. Physical function improved with longer 6-minute walk distances in the intervention group (465.8 ± 74.5 m) than in the control group (398.7 ± 92.9 m) (p = 0.016). PROs scores for all participants were within the limits of the normal range. The estimated cost per participant of carrying out this intervention was USD $126.57. Our 12-week behavioral PA intervention, based on the COM-B framework, was found to be acceptable, feasible and safe in childhood cancer survivors. This study is an important step in the right direction to make exercise standard practice in pediatric oncology. Clinical trial registration: NCT04947709. [ABSTRACT FROM AUTHOR]

Backgound: Studies portray that one in every nine Indians develops cancer during their lifetime. Admissions to the Pediatric Oncology departments are increasing like any other department. Cancer affects not only the patients but also their caregivers both physically and psychologically. Aims and Objectives: In this scenario, the study aims to understand the caregivers' level of resilience and the associated risk and protective factors. Materials and Methods: This descriptive study was conducted in Kerala. Sixty caregivers of the children in the age group between 1-17 years, diagnosed with cancer were selected for the study. Mexican Resilience Scale and self-prepared interview schedule were used to collect the quantitative data. Qualitative data were collected using an in-depth interview guide. Results: The study found that the majority of the respondents are moderately resilient, with men exhibiting higher resilience than women. The prime factors contributing to resilience were identified as strength and self-confidence, social competence, family support, social support, and structure. The study further identified individual factors (flexibility, emotional stability, etc.), familial factors (positive family environment), and community factors (support from NGOs and support groups, etc.) as protective factors contributing to resilience. Additionally, the study revealed how individual (lack of emotional stability, introverted nature, etc.), familial (relationship issues), and community (social perceptions about the disease) levels of risk factors impact resilience. Conclusion: The importance of strengthening the support systems around the caregivers and importance of oncology social worker to deal with the psychosocial issues of patients and caregivers are also discussed in this paper. [ABSTRACT FROM AUTHOR]

Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Methods: A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0–18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Results: Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion: e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care. [ABSTRACT FROM AUTHOR]

Background: Communication is an essential aspect of high-quality patient- and family-centered care. A model for pediatric cancer communication developed in the United States defined eight communication functions. The purpose of this study was to explore the relevance of these functions in Pakistan as part of an effort to understand the role of culture in communication. Materials and methods: Semi-structured interviews were conducted with 20 clinicians and 18 caregivers of children with cancer at two major cancer centers. Interviews were conducted in Urdu or English and transcribed and translated as necessary. Two independent coders used a priori codes related to the communication model as well as novel codes derived inductively. Thematic analysis focused on operationalization of the functional communication model. Results: Clinicians and caregivers in Pakistan discussed the importance of all eight communication functions previously identified including: information exchange, decision-making, managing uncertainty, enabling family selfmanagement, responding to emotions, supporting hope, providing validation, and building relationships. The operationalization of these functions was influenced by Pakistani cultural context. For example, information-exchange included the importance of addressing preconceptions and community myths, while managing uncertainty included strong references to religion and faithbased coping. Essential to all eight functions was trust between the family and the medical team. Discussion: These findings support the use of this functional communication model in diverse pediatric oncology settings and emphasize the importance of trust. Culturally sensitive operationalization of these functions could inform the adaptation of tools to measure communication and interventions aimed at supporting the needs of parents of children with cancer. [ABSTRACT FROM AUTHOR]

Background: Advances in pediatric oncology have significantly increased survival rates, yet have introduced challenges in managing long-term treatment side effects. This study process introduces an interdisciplinary clinical intervention program rooted in the family resilience framework, aimed at improving wellbeing across the cancer trajectory for children and their families, especially those in Canadian communities far from specialized oncology centers with limited access to resources. Methods: Employing an intervention mapping approach, this program collaboratively involves patients, families, professionals, and researchers. It aims to identify vulnerability factors, establish a logic model of change, and devise comprehensive strategies that include professional interventions alongside selfmanagement tools. These strategies, tailored to address biopsychosocial and spiritual challenges, are adapted to the unique contexts of communities distant from specialized cancer treatment centers. A mixed-methods approach will evaluate program effectiveness. Expected results: Anticipated outcomes include the empowerment of families with self-management tools and professional support, designed to mitigate biopsychosocial and spiritual complications. By addressing the specific needs and limitations of these communities, the program strives to improve the overall health and well-being of both undergoing treatment and survivorship phases. Discussion: By focusing on comprehensive care that includes both professional interventions and self-management, this initiative marks a significant shift toward a holistic, family-centered approach in pediatric oncology care for remote communities. It underlines the necessity of accessible interventions that confront immediate and long-term challenges, aiming to elevate the standard of care by emphasizing resilience, professional support, and family empowerment in underserved areas. [ABSTRACT FROM AUTHOR]

Leukemia is a prevalent pediatric cancer with significant challenges, particularly in relapsed or refractory cases. Chimeric antigen receptor T-cell (CAR-T) therapy has emerged as a personalized cancer treatment, modifying patients' T cells to target and destroy resistant cancer cells. This study reviews the current therapeutic options of CAR-T therapy for leukemia, addressing the primary obstacles such as antigen escape and T-cell exhaustion. We explore dual-targeting strategies and their potential to improve treatment outcomes by preventing the loss of target antigens. Additionally, we examine the mechanisms of T-cell exhaustion and strategies to enhance CAR-T persistence and effectiveness. Despite remarkable clinical successes, CAR-T therapy poses risks such as cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS). Our findings highlight the need for ongoing research to optimize CAR-T applications, reduce toxicities, and extend this innovative therapy to a broader range of hematologic malignancies. This comprehensive review aims to provide valuable insights for improving leukemia treatment and advancing the field of cancer immunotherapy. [ABSTRACT FROM AUTHOR]

Cancer predisposition syndromes are recognized in about 10% of pediatric malignancies with several genes specifically involved in a subset of pediatric tumors such as DICER1, in pleuropulmonary blastoma, cystic nephroma, and brain sarcomas. By contrast, the role of BRCA1/2 in pediatric cancer predisposition is still under investigation. We present two cases of young first-degree cousins, both carrying a germline BRCA2 variant and developing tumors characterized by somatic DICER1 mutations. Patient 1 presented with a cystic nephroma harboring a somatic DICER1 variant (p.Asp1810Tyr), while patient 2 had a primary intracranial DICER1-mutated sarcoma showing a distinct somatic DICER1 variant (p.Asp1709Glu) as well as biallelic inactivation of TP53 (p.Val173Leu, VAF 91%) and APC (p.Ile1307Lys, VAF 95%) and a pathogenic variant in KRAS (p.Gln61His). Both patients carried the same germline BRCA2 variant (p.Arg2842Cys) of unknown significance. The same variant was found in the mother of patient 2 and in the father of patient 1, who are siblings. A homologous recombination deficiency signature was not identified in any of the two tumors, possibly suggesting a reduction of BRCA2 activity. The association of BRCA2 and DICER1 variants in our cases hints at a potential cooperative role in cancer pathogenesis. Further studies are warranted to elucidate the interplay between BRCA1/2 and DICER1 variants and their implications for cancer predisposition and treatment in pediatric patients. [ABSTRACT FROM AUTHOR]

Introduction: Cancers are amajor cause of childhood mortality worldwide especially in LMICs where underdiagnoses and lack of quality cancer data hampers effective cancer control efforts. This study aimed to document and describe the patterns and characteristics of childhood cancers in the North East geopolitical zone of Nigeria. Methods: This was a retrospective cross-sectional study that collected cancer data from 4 out of the 6 states in the North East of Nigeria. The data included all malignancies diagnosed in children aged 0-19 years between 2019 and 2022. The age-specific incidence rates were also calculated for the individual 5-year age groups (0-4 years, 5-9 years, 10-14 years, and 15-19 years). The crude incidence rates (CIR) were calculated as the weighted averages of the respective ASRs in each age range within 0-14 years and 0-19 years respectively. The cancers were grouped according to the International Incidence of Childhood Cancers, volume 3 (IICC3). Results: Cancers in people <20 years accounted for 7.3% of all cancers diagnosed over the same period. The crude incidence rates (CIR) for cancers in children and adolescents were 20.9 per million children aged 0-19 years and 18.8 per million children aged 0-14 years respectively, while the agestandardized rates (ASR) were 1.80 and 1.63 per million person-years respectively. There was a variation in the most commonly diagnosed cancers across all age groups. However, lymphomas were the most commonly diagnosed cancers overall, while CNS tumors were overwhelmingly rare. Conclusion: Despite data limitations, this study provides useful insights into patterns of cancers in the region and will hopefully provide a basis for the strengthening of pediatric oncology care, childhood cancer control programs and population-based cancer registries. [ABSTRACT FROM AUTHOR]

Most newly diagnosed pediatric cancer patients reside in LMICs. These countries face challenges in providing quality treatment, particularly with procedures requiring stillness or causing pain. Conscious sedation (CS) is underutilized in LMICs due, causing treatment delays and adverse outcomes. Advocacy for CS teams, training, and policy support is essential to improve outcomes. [ABSTRACT FROM AUTHOR]

Intraarterial chemotherapy (Ophthalmic Artery Chemosurgery/OAC) for retinoblastoma has transformed management of retinoblastoma worldwide since Pierre Gobin MD and I introduced it in 2006. Case reports, institutional series, meta-analyses, and randomized trials have validated its effectiveness and safety. It allows more eyes to be saved (at Memorial Sloan Kettering Cancer Center (MSKCC) as a result, we have gone from removing 96% of retinoblastoma eyes that presented with leukocoria (comparable to modern day International Classification “D” and “E” eyes) to saving 95% of these eyes with primary OAC management allows the majority of advanced intraocular eyes to be salvaged (both “D” and “E” eyes) prior to the chemoreduction era to saving 95% of these eyes with primary OAC management. OAC attains cures faster than intravenous protocols, has fewer systemic side effects, and is overall cheaper than intravenous approaches (because of the absence of side effects which are the main driver of cost in pediatric oncology). Unlike systemic chemotherapy no ports are needed (and no removal of ports for life threatening infections), it does not alter the immune system (so children can be immunized), it does not affect patient growth (and children who had received systemic chemotherapy catch up in growth during OAC), it does not affect hearing (which systemic Carboplatin does-especially in children <6 months of age), it eliminates the second cancers caused by radiation and systemic chemotherapy and does not compromise survival with all series showing patient survival >98%. [ABSTRACT FROM AUTHOR]

Mediastinal mature cystic teratomas are rare benign germ cell tumors that predominantly affect children. Despite their low incidence, they present unique diagnostic and management challenges. Early recognition and appropriate surgical intervention are crucial for optimal outcomes. This case report aims to highlight the importance of prompt diagnosis and management of mediastinal mature cystic teratomas in pediatric patients. We present the case of a 10-year-old female patient who presented with persistent chest pain and dyspnea. Imaging studies, including a chest X-ray and contrast-enhanced chest CT scan, revealed a large, well-circumscribed anterior mediastinal mass with calcifications. The patient underwent a right thoracotomy, resulting in the excision of a 6 × 5 × 5 cm mature cystic teratoma. Histopathological examination confirmed the diagnosis. The patient had an uneventful recovery and was discharged in stable condition. Mediastinal mature cystic teratomas pose diagnostic challenges due to their nonspecific symptoms and heterogeneous imaging characteristics. Differential diagnosis includes other mediastinal masses containing fat and calcifications. Surgical excision is the preferred treatment, although complete removal can be challenging due to adhesions to neighboring structures. Close follow-up is necessary to monitor for recurrence and complications. Mediastinal mature cystic teratomas are rare tumors with variable clinical presentations. Early detection and surgical intervention are crucial for optimal outcomes. These tumors should be included in the list of differential diagnoses for mediastinal masses in pediatric patients. [ABSTRACT FROM AUTHOR]

Introduction: cancer and its treatments have been associated with poor nutritional status in children and adolescents. Objective: to establish the nutritional risk of pediatric patients and the degree of food and nutritional insecurity in the homes of children and adolescents with cancer who have been hospitalized in a high complexity pediatric oncology center. Methods: a prospective observational study conducted at the Fundación Hospital Pediátrico la Misericordia - HOMI. It included a sample of 41 children and adolescents aged 0 to 17 years and 11 months with a diagnosis of childhood cancer during the study period. The participants recruited during hospitalization had the application of the SCAN nutritional screening tool for childhood cancer, Spanish version, validated in HOMI and the Latin American and Caribbean Scale of Food and Nutritional Security - ELCSA, adapted and validated in Colombia. Results: 76 % (n = 31) of the patients were classified as "At risk of malnutrition" using the SCAN-SP nutritional screening tool. It was observed that 56 % of all households had a proportion of food insecurity, of which the classification of food insecurity was mild in 29 %, moderate in 20 % and severe in 7 % of households with children under 18 years of age. Conclusion: in the framework of the nutritional care process, it is important to take into account factors that include a complete nutritional risk assessment and evaluation that includes the measurement of food security. [ABSTRACT FROM AUTHOR]

Children/adolescents with cancer can develop adverse effects impacting gross motor function. There is a lack of gross motor function assessment tools that have been validated for this population. The aim of this multicenter cross-sectional study was to preliminary validate the 88-item Gross Motor Function Measure (GMFM-88) for use in children/adolescents with cancer, exploring internal consistency and floor/ceiling effect. Inclusion criteria regarded children/adolescents diagnosed with cancer on treatment or <1 year off therapy. The internal consistency was assessed using Cronbach's α, and the floor–ceiling effects were calculated through percentage. This study involved 217 participants with heterogeneous neoplasm conditions. Internal consistency was good, with a Cronbach's α of 0.989. Floor–ceiling effect analysis reveals that several items obtained a dichotomous scoring distribution in each of the five sub-scales of the GMFM-88. This can be explained by the heterogeneous clinical characteristics of the target population. The preliminary validation of GMFM-88 in a group of children/adolescents affected by cancer suggests that some items are not able to discriminate between different gross motor function levels, and therefore it does not represent an informative tool to measure gross motor function in children with cancer. Future research is needed to define which ones could be more useful for clinical practice. [ABSTRACT FROM AUTHOR]

The treatment of childhood cancer is challenged by toxic side effects mainly due to chemotherapy-induced organ damage and infections, which are accompanied by severe systemic inflammation. Insulin-like growth factor I (IGF-I) is a key regulating factor in tissue repair. This study investigated associations between the circulating IGF-I levels and chemotherapy-related toxicity in pediatric acute lymphoblastic leukemia (ALL). In this prospective study, we included 114 patients (age: 1–17 years) with newly diagnosed ALL treated according to The Nordic Society of Paediatric Haematology and Oncology (NOPHO) ALL2008 protocol between 2013 and 2018. The patients' plasma levels of IGF-I, and the primary binding protein, IGFBP-3, were measured weekly during the first six weeks of treatment, including the induction therapy. The patients' systemic inflammation was monitored by their C-reactive protein (CRP) and interleukin (IL)-6 levels and their intestinal epithelial damage by their plasma citrulline levels. IGF-I and IGFBP-3 were converted into sex-and age-adjusted standard deviation scores (SDS) using 1621 healthy children as reference. At ALL diagnosis, IGF-I levels were decreased (median (quartiles): −1.2 SDS (−1.9 to −0.5), p = 0.001), but increased significantly following the initiation of chemotherapy, peaking on day 8 (0.0 SDS (from −0.8 to 0.7), p < 0.001). This increase correlated with the levels of CRP (rho = 0.37, p < 0.001) and IL-6 (rho = 0.39, p = 0.03) on day 15, when these markers reached maximum levels. A larger IGF-I increase from day 1 to 15 correlated with a slower recovery rate of the intestinal damage marker citrulline from day 15 to 29 (rho = −0.28, p = 0.01). Likewise, IGFBP-3 was reduced at diagnosis, followed by an increase after treatment initiation, and was highly correlated with same-day IGF-I levels. This study demonstrates a chemotherapy-induced increase in IGF-I, with a response that appears to reflect the severity of tissue damage and systemic inflammation, preceding CRP and IL-6 increases. IGF-I may have potential as an early reactive biomarker for acute toxicity in patients with ALL. [ABSTRACT FROM AUTHOR]