Donna L. Johnston

Background: Central nervous system (CNS) tumors in infants are rare, pose unique clinical challenges, and lack large‐scale evidence‐based data to guide management. This study seeks to describe CNS tumors in Canadian infants and to compare their outcomes with those of older children. Methods: We conducted a retrospective cohort study using the Cancer in Young People in Canada (CYP‐C) database, a population‐based childhood cancer surveillance program in Canada. The study included all children under 10 years with newly diagnosed CNS tumors between 2001 and 2020. Cox proportional hazards models were employed to compare event‐free survival (EFS) and overall survival (OS) between infants (n = 157, 51.7%, including 95 infants [31.3%] with low‐grade and 36 infants [11.8%] with high‐grade gliomas), followed by atypical teratoid/rhabdoid tumors ( n = 45, 14.8%), choroid plexus tumors ( n = 33, 10.8%), ependymomas ( n = 31, n = 10.2%), and medulloblastomas ( n = 15, 5.3%). Infants had significantly more metastatic disease compared to older children (15.0% vs. 8.7%; p < 0.001). Treatment approaches differed significantly between infants and older children, with infants receiving radiotherapy far less frequently (6.9% vs. 22.2%; p < 0.001). Compared with older children, infants had worse 5‐year EFS (43.9% [95% CI: 35.9–50.1] vs. 57.7% [95% CI: 55.6–59.8]; p < 0.001) and worse 5‐year OS (52.8% [95% CI: 45.3–59.8] vs. 66.7% [95% CI: 64.7–68.7]; p < 0.001). In multivariable analyses adjusting for CNS tumor subtype and metastatic status, infants had significantly poorer EFS (adjusted HR [aHR] 1.55, 95% CI: 1.29–1.87; p < 0.001) and OS (aHR 1.64, 95% CI: 1.34–2.01; p < 0.011). Stratified by tumor subtypes, infants with low‐grade gliomas (OS HR 3.41, 95% CI: 1.76–6.63; p < 0.001), medulloblastomas (OS HR 2.47, 95% CI: 1.15–5.30; p = 0.02), and atypical teratoid/rhabdoid tumors (OS HR 2.69, 95% CI: 1.71–4.23; p  < 0.001) demonstrated significantly inferior outcomes compared to older children. Conclusion: Infants account for 8.4% of all children under 10 years with CNS tumors in Canada. Their outcomes are significantly worse than those of older children, particularly among patients with low‐grade gliomas, medulloblastomas, and atypical teratoid/rhabdoid tumors.

Objectives: To examine how healthcare provider communication shapes referral, acceptance and ongoing integration of specialist pediatric palliative care (SPPC). Methods: A qualitative study was conducted across four pediatric cancer centers in Canada. Sixty‐six healthcare providers working in oncology and palliative care settings participated in in‐depth interviews. Participants included physicians, nurses, psycho‐social clinicians and other members of the interprofessional health team. Transcripts were analyzed using iterative, inductive coding based on the Grounded Theory method. Results: Communication barriers to referral and acceptance included inadequate explanations for SPPC involvement, incomplete or misleading descriptions of services, and framing SPPC solely as end‐of‐life care. Oncologist discomfort, avoidance, and use of ambiguous “coded” language further hindered referral conversations. Facilitators included strong communication skills, clear and comprehensive explanations of SPPC, and age‐appropriate engagement with patients. For ongoing integration of SPPC, poor interprofessional communication and unclear role and responsibilities among team members created risks for fragmented care. In contrast, structured collaboration such as joint meetings, shared care planning, and proactive information exchange, supported effective integration of SPPC and consistent messaging to patients and families. Conclusions: Communication is central to successful SPPC referral, acceptance, and integration in pediatric oncology settings. Both clinician‐family and interprofessional communication practices directly shaped understanding and engagement with SPPC services. Interventions should prioritize communication training, clearer framing of SPPC, and enhanced collaboration between teams. Early involvement of the psychosocial provider along with an SPPC specialist may further improve communication and uptake, ultimately strengthening care for children with serious illness and their families.

Background/Objectives: Early palliative care referral for new oncologic diagnoses has been widely recognized as integral to comprehensive care, but there exists a paucity of research assessing referral patterns in pediatric oncology. The objective of this study is to review the change in referral patterns at the Children’s Hospital of Eastern Ontario (CHEO) before and after a set of referral criteria were implemented for routine consultation of pediatric palliative care (PPC) for all newly diagnosed oncology patients. Methods: This was a retrospective single-centre chart review of all patients with a new oncologic diagnosis from 21 October 2017 to 1 January 2024 using information available in the patient’s electronic medical record. Data was evaluated for referral patterns and the time from diagnosis to referral to PPC comparing the period before and after referral criteria were initiated (1 July 2019). Results: A total of 504 chart reviews were completed and 226 patients were referred to PPC. The proportion of patients referred to PPC showed a statistically significant increase from 36.8% to 75.4% after introduction of PPC referral criteria (χ2(1) = 44.98, p < 0.001). The time from diagnosis to referral showed a statistically significant decrease from a median of 267 days (IQR 116–551.5) prior to criteria to 11 days (IQR 4–27) post-criteria (Mann–Whitney U test, p < 0.001). Time to referral decreased significantly across all diagnostic subgroups except for CNS tumours. Conclusions: Having referral criteria for consultation to PPC increased the proportion of oncology patients referred to PPC and resulted in a significant decrease in time to referral. These findings suggest that structured referral criteria support earlier integration of pediatric palliative care within oncology programmes.

Background: Early integration of pediatric palliative care (PPC) is associated with improved symptom management, quality of life, and healthcare utilization for children with cancer. Despite this, variation persists in how PPC is understood, operationalized, and integrated within pediatric oncology programs. In particular, ambiguity surrounding the roles of oncology teams providing generalist palliative care and specialist PPC teams may contribute to delayed or inconsistent involvement. Methods: We conducted a qualitative study using a grounded theory approach as part of a larger multi‐site project examining barriers and facilitators to early PPC integration in pediatric oncology. Semi‐structured interviews were conducted with healthcare professionals from four Canadian pediatric centers, including oncologists, PPC physicians, nurses, social workers, and other interprofessional team members. Interviews explored definitions of PPC and perceived roles and responsibilities of oncology and PPC teams. Transcripts were coded iteratively using constant comparative analysis until thematic saturation was reached. Results: Participants from both oncology and PPC teams demonstrated substantial concordance in defining PPC as holistic, family‐centered care focused on quality of life, symptom management, psychosocial support, and goal‐concordant decision‐making. Both groups described overlapping responsibilities, particularly in symptom control and psychosocial care. However, specialist PPC teams identified additional roles including complex serious illness communication, bereavement support, funeral planning, and 24/7 availability that oncology teams did not consistently recognize as part of their role. Participants emphasized that PPC roles are fluid and context‐dependent, shifting across disease trajectory, care setting, family needs and goals, and institutional resources. Conclusions: In pediatric oncology settings, overlap between generalist and specialist PPC reflects collaborative care rather than duplication. However, a lack of shared role clarity may impede timely specialist PPC involvement. Developing shared frameworks, institutional definitions, and ongoing interdisciplinary communication may support earlier, coordinated, and family‐centered PPC integration for children with cancer.

PURPOSE: To explore pediatric oncology and palliative care health care providers' perspectives on the barriers and facilitators to pediatric palliative care (PPC) referral for children with cancer in Canada using a qualitative approach to inquiry. METHODS: Sixty-six health care providers from four tertiary pediatric hospitals across Canada participated in semistructured interviews. Data analysis used the grounded theory method. Data collection and analysis occurred concurrently using an inductive, constant comparative approach. Line-by-line coding guided the development of themes. NVivo software supported data management and coding. Through iterative analysis of the data, a systems theory–informed model of PPC referral was developed. RESULTS: The PPC referral process was best understood as a dynamic system involving four primary agents: oncologists, interprofessional oncology teams, PPC teams, and the patient and family. Each agent's readiness to initiate or accept referral was shaped by emotional, informational, cultural, skill-based, and environmental factors. We identified four distinct referral pathways, ranging from automatic referral at diagnosis to family-initiated referrals. Readiness for a referral emerged as a fluid, systemic state influenced by bidirectional interactions among all agents, rather than a static or solely clinical indicator. CONCLUSION: PPC referral is not a linear decision triggered by disease prognosis or progression alone, but rather a complex and evolving system shaped by interrelated human and organizational factors. Our systems theory model of PPC referral highlights the importance of fostering readiness across the health care team and integrating PPC as a relational and team-based process. These findings offer actionable insights to improve early PPC access and guide the design of interventions.

PURPOSE: Measuring clinical practice guideline (CPG)–consistent care through electronic health record (EHR) queries provides a scalable and efficient approach to evaluating quality of care. Template care pathways are used to operationalize CPGs. Goals were to (1) identify care pathway actions for supportive care in pediatric oncology that are amenable to EHR-based evaluation, (2) prioritize five care pathway actions for further assessment, (3) develop EHR queries to identify patients who received care pathway–consistent care, and (4) describe the proportion of pediatric patients with cancer who received care pathway–consistent care. METHODS: Within established template care pathways for pediatric cancer supportive care, we identified actions amenable to measurement using structured EHR data. Prioritization was performed by six pediatric oncology clinicians, resulting in five care pathway actions for further evaluation. We created EHR-based queries for each action at one site and applied them to a second site. Once queries were validated at both sites, we described care pathway–consistent care. RESULTS: The five high-value care pathway actions focused on (1) management of highly emetogenic chemotherapy, (2) chest computed tomography for prolonged fever and neutropenia investigation, (3) antifungal prophylaxis in AML, (4) treatment of Clostridioides difficile infection, and (5) cisplatin ototoxicity prevention. Queries created at one institution were successfully executed at the second institution. Care pathway–consistent proportions ranged from 16% for sodium thiosulfate administration in patients with nonmetastatic hepatoblastoma to 91% for antifungal prophylaxis in patients with AML. CONCLUSION: We successfully used the EHR to benchmark care pathway–consistent care. The prevalence of care pathway–consistent care was variable and low for some actions.

Purpose: Infants with cancer are rare and face unique challenges. Our study aims to describe the incidence of infantile cancers in Canada and to compare treatment‐related mortality (TRM) and their outcomes with those of older children. Methods: We conducted a retrospective cohort study using the Cancer in Young People in Canada database, including all infants (0 to p < 0.001. Neonates had significantly higher TRM (6.1 vs. 3.6%, HR 2.76, p < 0.001) as well as infants younger than 6 months (5.2 vs. 2.7%, HR 2.05, p < 0.001). Compared with older children, infants experienced higher risk of TRM (4.1 vs. 2.1%, HR 2.45, p < 0.001) and had inferior 5‐year EFS (66.2 vs. 68.6%, HR 1.27, p < 0.001) and OS (77.5 vs. 78.6%, HR 1.22, p < 0.001). Conclusion: The annual incidence of infantile cancers in Canada has increased and their outcomes are significantly worse than those of older children, as they face a higher risk of TRM, particularly in younger infants. Précis: The incidence of cancer in infants has increased significantly in Canada between 2001 and 2020 and their outcomes are significantly lower than those of older children, being at greater risk of TRM.

Janet Wilson, Nicole Le Saux, Lisa Pinto, Eric Eckbo and Donna L. Johnston. CPHO 2025;32:33-40. https://doi.org/10.15264/cpho.2025.32.2.33

Purpose: Care pathways are an implementation tool to help bridge the gap between evidence‐based clinical practice guidelines and clinical practice. At four pediatric cancer institutions in Ontario, Canada, institution‐specific care pathways for the management of infection complications in pediatric oncology were created. To standardize care delivery approaches across institutions, a project to harmonize the institution‐specific care pathways was undertaken.Methods: The institution‐specific infection care pathways were compared. Discrepancies between the pathways were identified, and 33 care pathway components covering 10 clinical actions were prioritized for harmonization. An in‐person harmonization meeting with representatives from all institutions was convened, where potential areas for harmonization were identified. At the end of the discussion of each clinical action, the institutional representatives gauged the feasibility of harmonization on a five‐point Likert scale. A second virtual meeting was then held to finalize the harmonization plan.Results: Of the 33 care pathway components, harmonization was achieved for 25. Of the 10 components related to antibacterial and antifungal prophylaxis choice, timing, and indications, eight were harmonized. Harmonization was reached for 11 of 16 components related to the initial and ongoing management of febrile neutropenia. Harmonization was achieved for six of the seven components related to prolonged fever.Conclusion: Harmonization of infection care pathways across institutions was achieved. However, certain care pathway elements may not be amenable to harmonization due to differences in institutional resources, cultures, and priorities.