Abstract Background Prior studies using population-level databases have identified racial and socioeconomic disparities in pediatric CNS tumor outcomes but lack patient-specific detail. This single-center retrospective study used deep chart review to identify individual-level factors, including insurance status, documented social concerns, treatment details, and diagnostic timing, that may explain these disparities. Methods Using electronic health records of patients at Children’s Hospital Colorado from 1986-2020, we identified 898 patients treated for CNS tumors. The primary outcomes of interest were 5-year survival, timing of diagnosis, and treatment. Multivariable logistic regression and Cox regression were used to identify covariates associated with our outcomes of interest. Results We found that age, race, tumor type, diagnosis year, and social concerns influenced receipt and timing of treatment. Age, race, patient rural vs. urban residence, and tumor type impacted survival outcomes. Patients with 3+ social concerns were less likely to survive after 5 years than children with no social concerns (OR 1.66, P = .045). However, on multivariable analysis, children with 2 social concerns were more likely to survive 5 years than children with no concerns (OR 0.55, P = .042). Conclusions Demographic and socioeconomic factors influence type and timing of care, as well as survival outcomes in pediatric patients with CNS tumors. Minority status, age, social factors, and rural/urban status correlate with differences in care. This emphasizes the importance of considering these factors and addressing disparities to achieve equitable care.

Background:Disparities in cancer outcomes persist between racial, ethnic, and socioeconomic groups. One potential cause is lack of appropriate representation in dose-finding clinical trials. We investigated the extent of disparities in phase I clinical trials and recent changes in the setting of institutional efforts to mitigate disparities, legislative interventions, FDA guidance for sponsors and the COVID-19 pandemic. Methods:We performed a retrospective review of patients enrolled in phase I clinical trials at the University of Colorado Cancer Center in 2018-2019 and 2022-2023. We collected demographics, area deprivation index (ADI), tumor type and other clinical variables. Differences between cohorts were evaluated with t-tests, chi-Square test, or Fisher exact test. Progression-free survival (PFS) and overall survival (OS) were calculated using the Kaplan-Meier method. Hazard ratios (HR), confidence intervals (CI) and p-values were derived using the Cox-proportional hazards method. Results:A total of 361 patients were included (209 and 152 in the 2018-2019 and 2022-2023 cohorts, respectively). The population consisted of 85.0% White, 3.3% Asian, 1.4% Black, 0.3% Native Hawaiian or Pacific Islander and no American Indian/Alaskan Native (AIAN) patients by race, and 9.1% Hispanic by ethnicity. The most common tumor type was colorectal cancer (18.3%). Compared to 2018-2019, we observed increases in non-English speakers from 1.9% (4/209) to 6.6% (10/152) (p = 0.028) and in translated informed consent forms (ICFs) from 1.4% (3/209) to 5.9% (9/152) (p = 0.033) in 2022-2023. There were no significant changes in race, ethnicity, insurance, or tumor type, although there was a moderate increase in Hispanic patients from 8.1% to 10.5%. There were no differences in clinical outcomes by race, ethnicity, or ADI scores in the overall study population. However, in the most common cancer type, colorectal cancer, higher ADI scores were associated with decreased median PFS and OS. Conclusion:The interventions resulted in an increase in accrual of non-English speaking patients, however, there was not yet a significant change in overall race and ethnicity. Our study confirms poorer outcomes for patients with higher ADI scores. Further research is warranted to understand disparities in clinical trial accrual, and intervention is needed to improve outcomes for disadvantaged patients.

Background:Pediatric central nervous system (CNS) tumors are the leading cause of cancer-related mortality in children, with survival outcomes significantly influenced by racial, ethnic, and socioeconomic disparities. These disparities may arise from delayed diagnosis, unequal access to care, and challenges in navigating complex treatment decisions, including clinical trial enrollment. This study explores the experiences of a diverse cohort of families from symptom onset through treatment initiation, focusing on their perspectives on diagnosis, treatment discussions, and decision-making processes. Methods:This qualitative study involved semi-structured interviews with families of children diagnosed with pediatric CNS tumors. Transcripts were analyzed by two separate coders using thematic analysis. Results:Four major themes were identified: Experience of diagnosis, Treatment discussion, Treatment decision, and Communication. Families described the emotional toll of diagnosis, marked by uncertainty, shock, and urgency. Many reported difficulties understanding complex medical information and accessing advanced treatment options. Treatment decisions were influenced by perceptions of therapeutic efficacy, anticipated side effects, and available family-level resources. Variations in perceived barriers to care highlighted disparities in support-seeking behaviors, emphasizing the need for personalized communication and tailored resources. Conclusion:This study provides a nuanced understanding of pediatric CNS tumor care by centering patient and family experiences. Findings underscore the need for targeted interventions to improve access to innovative treatments, support informed decision-making, and enhance communication. Future research should incorporate quantitative methods to validate findings and develop scalable solutions that address structural and informational barriers, ultimately reducing disparities and improving family experiences in pediatric CNS tumor care.

Patients of minority race, ethnicity, and lower socioeconomic status experience poorer survival of pediatric CNS tumors in the US. These disparities arise in part from differences in stage of disease at diagnosis, suggesting potential for mitigation via earlier diagnosis. The UK HeadSmart campaign, designed to increase awareness of pediatric CNS tumor symptoms among primary care practitioners (PCPs) and the public, has led to a significant decrease in time to diagnosis. We adapted HeadSmart into a 30-min workshop on presentation, common symptoms, work-up, and diagnosis to investigate the intervention’s value in the US. We collected demographic data on the participants, paired with a pre/post, multiple-choice assessment of their knowledge of pediatric CNS tumor diagnosis. A total of 57 providers participated in the survey; 28 completed both the pre- and post-assessments. The mean pre-workshop score was 4.12; the mean post-workshop score was 5.64 (unpaired t-test p = 0.0002). The mean improvement was 1.1 (paired t-test p = 0.0002). In summary, an educational tool based on HeadSmart is effective at increasing understanding of timely diagnosis of pediatric CNS tumors among US PCPs. Further study, refinement, and dissemination have the potential to help mitigate disparities in pediatric CNS tumor outcomes.

Purpose A medical record-level cohort study to investigate demographic and socioeconomic factors influencing treatment, timing of care, and survival outcomes in pediatric patients diagnosed with central nervous system (CNS) tumors. Methods Using electronic health records of patients at Children's Hospital Colorado from 1986–2020, we identified 898 patients treated for CNS tumors. The primary outcomes of interest were 5-year survival, timing of diagnosis, and treatment. Multivariable logistic regression and Cox regression were used to identify covariates associated with our outcomes of interest. Results We found that age, race, tumor type, diagnosis year, and social concerns influenced receipt and timing of treatment. Age, race, patient rural vs. urban residence, and tumor impacted survival outcomes. Time to presentation and treatment were significantly different between White and minority patients. American Indian/Alaska Native and Black patients were less likely to receive chemo compared to White patients (OR 0.28, 0.93 p = 0.037, < 0.001). Patients with 3 + social concerns were more likely to survive after 5 years than children with no or unknown social concerns (OR 1.84, p = 0.011). However, with an adjusted hazards ratio, children with 2 social concerns were less likely to survive to 5 years than children with no or unknown concerns (OR 0.58, p = 0.066). Conclusions Demographic and socioeconomic factors influence timing of care and survival outcomes in pediatric patients with CNS tumors. Minority status, age, social factors, rural, and urban patients experience differences in care. This emphasizes the importance of considering these factors and addressing disparities to achieve equitable care.