"Oh my word, so overwhelmed": Exploring the patient and family experience with diagnosis and treatment decision-making in pediatric CNS tumors.
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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.