The University of Cape Town’s paediatric cancer database: Results from the first years (2019–2021)

Abstract

Background: The paediatric oncology multidisciplinary team at the University of Cape Town (UCT) developed a research-ready data set.Aim: This study aimed to describe the early results detailing the epidemiological profile of childhood cancer patients and evaluated factors associated with presentation and outcome.Setting: The UCT paediatric oncology platform at the Red Cross War Memorial Children’s Hospital (RCWMCH) and Groote Schuur Hospital (GSH).Methods: A REDCap database was developed with a Cancer Association of South Africa (CANSA) grant. A database administrator consented all new patients and recorded demographic and social information.Results: There were 212 children consented from 2019 to 2021: 109 girls and 103 boys. The age range was from 1 day to 15.98 years, with a median of 5.18 years. Only 32 (15%) of these families had medical insurance, 34 (16%) lived in informal housing and 25 (12%) did not have access to piped water. Seventy-four families (35%) reported a relative with cancer, including seven first degree relatives. With a median follow-up of 12.4 months, the estimated 2-year overall survival (OS) and event-free survival (EFS) was 77% and 72%, respectively. Overall survival was significantly different (p = 0.013) by disease group, varying from 100% for Wilms tumour and germ cell tumours to 52% for rhabdomyosarcoma. Most patients with solid tumours (72%) had advanced disease at diagnosis. Outcomes were poorer for children living in informal housing and without piped water.Conclusion: A real-time database can provide a research-ready data set for interrogating cohort-specific factors impacting childhood cancer outcomes.