Development and early implementation of a statewide comprehensive childhood cancer network to support pediatric oncology care and research.

10056 Background: Although pediatric cancer survival has improved substantially, families continue to face fragmented access to navigation, clinical trials, survivorship care, and psychosocial support. Florida’s pediatric oncology system is geographically dispersed and resource-variable, highlighting the need for coordinated statewide infrastructure. Methods: The Live Like Bella Comprehensive Childhood Cancer Network (CCCN) was established as a statewide, multi-institutional initiative to address gaps in access, care coordination, and research participation. Phase 1 activities emphasized infrastructure development, stakeholder engagement, and needs assessment. A caregiver survey was distributed to 2,478 families who received pediatric cancer support services between April 2024 and August 2025. Descriptive analyses evaluated barriers to care, information gaps, survivorship education, and clinical trial awareness. Missing survey responses were handled using complete-case analysis for each item, with denominators reported per question. In parallel, CCCN convened children’s hospitals, academic centers, advocacy organizations, and researchers to develop collaborative frameworks, digital navigation tools, and consortium-based initiatives. Results: Over 170 caregivers responded. Eighty percent reported significant non-clinical care challenges (e.g., housing, utilities, transportation), 67% reported work-related disruptions, and 52% identified unmet caregiver support needs. Thirty-three percent reported difficulty locating services. Only 50–53% rated information about childhood cancer and diagnosis-specific education as comprehensive. Forty-eight percent of families reported being offered a clinical trial; among those, 71% participated. Survivorship education gaps were common, with 22.7% and 26% reporting limited or no information on post-treatment and survivorship care. CCCN established leadership and advisory governance, launched development of a digital navigation and clinical trial matching portal, hosted a statewide research symposium (>250 participants), and initiated multi-institutional grant proposals focused on precision oncology and navigation workforce development. Conclusions: Early CCCN implementation demonstrates the feasibility of a statewide, family-centered model to identify care gaps, support research participation, and align pediatric oncology stakeholders. Ongoing evaluation will assess impacts on access, survivorship, and clinical trial engagement.

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Publication Details

Journal
Journal of Clinical Oncology
Published
2026-05-27
DOI
https://doi.org/10.1200/jco.2026.44.16_suppl.10056
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
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article

Development and early implementation of a statewide comprehensive childhood cancer network to support pediatric oncology care and research.

Chris Hagemeyer, Jennifer McCafferty Fernandez, Nicole De Lara Puente
Journal of Clinical Oncology
Childhood Cancer Survivors' Quality of Life
article

Development and early implementation of a statewide comprehensive childhood cancer network to support pediatric oncology care and research.

Chris Hagemeyer, Jennifer McCafferty Fernandez, Nicole De Lara Puente
article en

Abstract

10056 Background: Although pediatric cancer survival has improved substantially, families continue to face fragmented access to navigation, clinical trials, survivorship care, and psychosocial support. Florida’s pediatric oncology system is geographically dispersed and resource-variable, highlighting the need for coordinated statewide infrastructure. Methods: The Live Like Bella Comprehensive Childhood Cancer Network (CCCN) was established as a statewide, multi-institutional initiative to address gaps in access, care coordination, and research participation. Phase 1 activities emphasized infrastructure development, stakeholder engagement, and needs assessment. A caregiver survey was distributed to 2,478 families who received pediatric cancer support services between April 2024 and August 2025. Descriptive analyses evaluated barriers to care, information gaps, survivorship education, and clinical trial awareness. Missing survey responses were handled using complete-case analysis for each item, with denominators reported per question. In parallel, CCCN convened children’s hospitals, academic centers, advocacy organizations, and researchers to develop collaborative frameworks, digital navigation tools, and consortium-based initiatives. Results: Over 170 caregivers responded. Eighty percent reported significant non-clinical care challenges (e.g., housing, utilities, transportation), 67% reported work-related disruptions, and 52% identified unmet caregiver support needs. Thirty-three percent reported difficulty locating services. Only 50–53% rated information about childhood cancer and diagnosis-specific education as comprehensive. Forty-eight percent of families reported being offered a clinical trial; among those, 71% participated. Survivorship education gaps were common, with 22.7% and 26% reporting limited or no information on post-treatment and survivorship care. CCCN established leadership and advisory governance, launched development of a digital navigation and clinical trial matching portal, hosted a statewide research symposium (>250 participants), and initiated multi-institutional grant proposals focused on precision oncology and navigation workforce development. Conclusions: Early CCCN implementation demonstrates the feasibility of a statewide, family-centered model to identify care gaps, support research participation, and align pediatric oncology stakeholders. Ongoing evaluation will assess impacts on access, survivorship, and clinical trial engagement.

Journal of Clinical OncologyVol. 44(16_suppl)
Cancer Research Foundation (US)
Industry, innovation and infrastructure
Openalex Percentile: Top 5%
Childhood Cancer Survivors' Quality of Life
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