LMIC-01. Real-world experience in dealing with children with suspected central nervous system (CNS) tumors at the Children’s Hospital Lahore, Pakistan

The objectives of this study were to document the trajectory of children with CNS tumors at a tertiary-care, public-sector hospital in Pakistan. This prospective, analytic, cohort study recorded all new cases of suspected CNS tumors (birth to 16 years) who presented at Children’s Hospital Lahore from 2023/01/01 to 2023/12/31. A total of 145 cases were included. Median age at presentation was 7.0 years (1.5 months–15 years); male-to-female ratio was 1.4:1. Median time to presentation was 2 months (0.1 – 96 months); delay of > 6 months was observed in 30.5% cases due to either delayed presentation to medical facility (74%) or healthcare delay (26%). Headaches and/or vomiting (56%), focal neurological deficits (23%), and seizures (15%) were the most common presenting complaints. First-degree consanguinity (46%), and family history of cancers/brain tumors (19%) were frequent; while café au lait macules were observed in 10% of cases. 50% of tumors were Infratentorial, 46% supratentorial and 4% spinal. Tumor excision was done in 45%, VP-shunts in 42%, and upfront chemotherapy was given in 2%. Only 60% reached a final diagnosis. Tissue diagnosis available in 39% of cases showed Medulloblastoma (18 patients, 32%), Pilocytic Astrocytoma (27%), and High-grade glioma (16%) as the commonest diagnoses. Radiological diagnosis in 21% of cases were DIPG/DMG (12%), Craniopharyngioma (7.6%), and Optic Pathway Glioma (1.4%). Of 18 medulloblastoma patients, 11 patients expired after surgery. Among the whole cohort of 145, 70 patients (48%) patients expired, including 38 before any surgery, 25% left against medical advice, and only 39 patients (27%) are on follow-up. One-year survival was 36% with a median survival of 4 months (0.07-96 months). It is concluded that notable diagnostic delay is not observed but the survival rate is dismal. Less than half of the patients with CNS tumors undergo active treatment, and a large proportion leave treatment/follow-up. A considerable number of cases with cancer predisposition syndromes were also suspected.