Patients and physicians in low and middle-income countries (LMICs) face challenges due to limited expertise and suboptimal access to appropriate diagnostic and treatment modalities. We report our experience in treating posterior fossa ependymoma (PFE) at MAHAK, a charity organization in Iran. The radiation oncology department is the only one exclusively dedicated to childhood cancer in the whole country.
Pediatric patients with PFE and referred to MAHAK between November 2008 and January 2016 were identified. Details on investigations and management done before referral were collected. Management at MAHAK and patients outcome were analyzed.
Out of 80 patients diagnosed as having ependymoma, 54 with PFE were identified. Fortythree received adjuvant radiotherapy and 11 patients were irradiated initially after recurrence. At a median follow-up of 5.1 years (range 0.3-9.7), the latter group had the worst outcome with a 5year overall survival (OS) of 27% (95% CI: 7-54). Patients who started radiotherapy within 77 days after initial surgery had a better outcome compared to those who started later (5-year OS: 74% vs 32%, p=0.05). Compliance with follow-up recommendations was poor. Only 22% of the patients had at least two IQ test assessments and 50% showed some decline over time. Three cases of growth hormone deficiency were detected but no one received replacement therapy.
Access to pediatric neurosurgery, anesthesia, and timely radiotherapy are among the most challenging obstacles to be overcome in LMICs. Our series confirms that chemotherapy is not an appropriate option for delaying radiotherapy, especially in young children. The importance of long-term follow-up should be acknowledged by the parents and medical team.
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