Factors impacting the time to diagnosisΓ in a cohort of newly diagnosed patients with retinoblastoma: Early interim analysis from INPOG-RB-19-01

Abstract

Background: Increased Time to diagnosis (TTD) is one of the most important determinants of advanced disease at diagnosis and outcomes in retinoblastoma (RB). The extent to which this is attributable to delayed recognition by family, vs delay in the healthcare system is unclear. INPOG-RB-19-01 is a prospective, multicentric collaborative study aimed at assessing epidemiological, clinical features of RB in India, and to evaluate outcomes following a standardized strategy. We present the interim analysis from this ongoing study with regards to TTD and its correlation with various variables. Methods: 18 centers were invited to enroll newly diagnosed patients with RB. The TTD was subdivided into parent and system-lag time. Epidemiological data, distance from treatment center, family history, socio-economic and educational status of parents were recorded. Clinical details documented included stage and laterality. Results: 698 patients were enrolled over 23 months. The median age at diagnosis was 2 years (2-228 months). 25% were < 12 months and 34% had bilateral disease. The commonest symptoms were leukocoria and strabismus with 21% having extraocular/metastatic disease at diagnosis. The TTD was < 3 months in 78%. The time-interval for seeking medical attention by parents was < 1 month, 1-3 months and >3months in 53%, 25% and 22% respectively. There was a positive correlation of increased TTD with stage, distance from treating center and strabismus and negative correlation with parental educational status. There was no impact of age, gender, birth order, laterality, family history on TTD. Conclusions: Majority of patients presented and arrived at a correct diagnosis within 3 months. Whilst this can be optimized there appears to be delayed recognition by parents. Efforts for earlier diagnosis need to be directed towards community awareness and routine screening during immunization. Whether more aggressive biology is at play merits evaluation.