ID #1081 Barriers to timely diagnosis and referral of pediatric patients with Central Nervous System tumors in Peru: A Mixed-Methods Study of Caregiver and Healthcare Worker Perspectives.
Rosdali Diaz-Coronado, Maria Pia Vargas-Martorelett, Eduardo Perez-Roca, Mariel Villegas, Cynthia Valdiviezo-Zapata, Alberto Ramirez-Espinoza, Hernan Cañari-Chumpitaz, Amela Siječić, Alejandra Quesada Stoner, Andrea M Cappellano, Ibrahim Qaddoumi, Daniel Moreira, Dylan GraetzAbstract
Background and Aims
Primary central nervous system (CNS) tumors are the second leading cause of childhood cancer in Peru. Despite early symptom onset, delays in diagnosis and referral to specialized care remain frequent in low- and middle-income settings. These delays are influenced by both caregiver-related and health system–level factors. This study aimed to quantify diagnostic and referral delays and explore perceived barriers reported by caregivers and healthcare workers.
Methods
We conducted a mixed-methods study. The quantitative component was a descriptive, prospective, longitudinal study including 76 pediatric patients (0–18 years) with CNS tumors referred to the Instituto Nacional de Enfermedades Neoplásicas (INEN) between September 2023 and April 2024. Data on healthcare pathways and diagnostic and referral intervals were prospectively collected and analyzed descriptively. The qualitative component consisted of semi-structured interviews with 15 caregivers and 37 healthcare workers from three tertiary institutions in Peru. Interviews were audio-recorded, transcribed, and thematically analyzed using MAXQDA software. Quantitative and qualitative findings were integrated during interpretation.
Results
The median patient age was 9 years (IQR 6–12). The majority were insured under the government insurance system (SIS, 93.4%).Headache was the most common presenting symptom (44.7%). Patients presented with a median of three symptoms (IQR 2.5–4) and consulted an average of four healthcare professionals (IQR 3–5) before receiving a CNS tumor diagnosis. Although time from symptom onset to first consultation was short (median <1 day), substantial delays followed, including 32 days to diagnostic imaging and 28 days from surgery to arrival at INEN. Computed tomography was the most frequently used initial imaging modality (69.7%). Caregivers and healthcare workers reported financial (indirect costs) and logistical barriers, limited access to diagnostic studies, institutional saturation, bed shortages, and complex referral processes. Caregivers additionally described long waiting times, difficulties navigating the healthcare system and shortage of trained professionals. These barriers varied by location, with Lima facing shortages in diagnostic services, while patients in other regions encountered geographical challenges and limited resources to understand cancer and its treatment.
Conclusions
Delays in pediatric CNS tumor diagnosis and referral in Peru arise from interconnected structural, institutional, and experiential barriers. Interventions targeting early symptom recognition, diagnostic capacity, referral pathways, and caregiver support are essential to reduce delays and improve equity in pediatric neuro-oncology care. Integration of quantitative and qualitative findings demonstrated that diagnostic and referral delays resulted from the interaction between healthcare system constraints and caregiver experiences, with distinct patterns according to geographic location.