Lag time for diagnosis and treatment in 1120 retinoblastoma children: Analysis from InPOG-RB-19-01

In all, 1120 patients from 20 centers were enrolled over a 36-month period. Extraocular or metastatic disease was present in 25.2% of patients at diagnosis. The mean lag time from symptom onset to treatment initiation was 4.2 months (range 0.5-61.6 months). Parental, diagnosis, and treatment lag time contributed to 44%, 26%, and 31% of the total lag time, respectively. Increased lag time had significant correlation with the stage at presentation (P < 0.05), lower socio-economic status (P = 0.006), increased distance from treating center (P = 0.001), younger maternal age at pregnancy (P < 0.05), family history of cancer (P = 0.031), and first consultation with a non-specialist (P = 0.001), and showed a negative correlation with improved maternal education. Parental lag time is the major contributor to the cascading delay in RB diagnosis and treatment initiation. Efforts for earlier diagnosis, therefore, need to be directed towards community awareness and routine screening during contact with healthcare professionals, such as at immunization.