ID #1123 System gaps and coordination needs in paediatric neuro-oncology : a five year experience in rural Kenya

Background

The management of childhood brain tumours requires multidisciplinary coordination for timely diagnosis and treatment. African studies describe brain tumour survival rates of between 13 to 60%[1] Contributors to poorer outcomes in low- and middle-income countries include: low suspicion among healthcare workers, diagnostic delays, fragmented referral pathways, limited neuro-oncology capacity and inconsistent multidisciplinary coordination. A multi-disciplinary team reviewed our hospital’s five-year experience to identify challenges and areas for strengthening paediatric neuro-oncology services.

Methods

We conducted a chart review of children aged 0-19 years, diagnosed with primary brain tumours at AIC Kijabe Hospital, between 2021 and 2025. We extracted the symptoms at presentation, diagnostic modality used, management given as well as outcomes. We identified system-level gaps and reflected on processes and improvements, to implement through coordinated efforts.

Results

We identified 71 patients over the 5-year period. The median age was 9 years, with 39 male patients (male to female ratio of 1.2:1). The symptom duration ranged from 2 weeks to 36 months (median 3 months). Commonest symptoms included headache 53 (75%), ataxia 48 (68%), vomiting 42(59%), vision changes 31 (44%) and seizures 28 (39%). All patients underwent imaging: 43(60%) brain CT scans and 42(59%) brain MRI scans; some patients had both imaging modalities. Half the patients (49%) had surgery (biopsy or resection) and a histological diagnosis, though only 9 of this included immunohistochemistry. Low grade gliomas were the commonest histological diagnosis at 14 (40%) followed by medulloblastomas as 7(20%) of the cases. Only 16 patients received adjuvant treatment (radiotherapy or chemotherapy). Loss to follow up was high at 22 (31%) patients. Only 19 (27%) patients were on active follow up, and 13 (18%) had died or been discharged on palliative care.

Conclusions

This review demonstrated major gaps in paediatric brain tumour care as late presentation, limited access to imaging and histopathology and high loss to follow up. It highlights the fragmented care pathway resulting in compromised management. In response, the team developed a synchronized model with a structured multi-disciplinary clinic and a patient navigation system to improve uptake of definitive treatment and reduce loss to follow up. Other planned interventions are targeted training for the clinical and nursing teams, and partnerships to strengthen imaging and pathology services. These aim to address the identified gaps and lay the foundation for a low cost but high impact model of coordinated care for children with brain tumours in our setting.

1. 1. V. Stagno, J. Mugamba, P. Ssenyonga, B. N. Kaaya, and B. C. Warf, “Presentation, Pathology, and Treatment Outcome of Brain Tumors in 172 Consecutive Children at CURE Children’s Hospital of Uganda. The Predominance of the Visible Diagnosis and the Uncertainties of Epidemiology in Sub-Saharan Africa,” Child’s Nervous System 30, no. 1 (2014): 137–146