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

Abstract

Setting: Increased lag time for diagnosis and treatment is a key determinant of adverse retinoblastoma (RB) outcomes. Analysis from INPHOG-RB-19-01, a prospective, multicentric study of newly diagnosed RB with regard to lag time and its correlation with various variables, is presented.

Patient or study population: All newly diagnosed RB patients treated at the participating centers during the study period were enrolled.

Observation procedure: Lag time was subdivided into parent-lag time (symptom onset to first consult) and system-lag time (including diagnosis lag time, defined as first consult to diagnosis, and treatment lag time, defined as diagnosis to treatment initiation.). Multivariate logistic regression analysis was used to assess factors predictive of increased lag time.

Main outcome measures: 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.

Keywords: Extraocular; lag time; parental lag time; retinoblastoma; time to diagnosis.

Figure 1

Geographic and state-wise distribution of the study centers (dark pink pointers) shown on the country map

Figure 2

Geographic distribution of the study patients. (a) shows the geographic distribution of all study patients on a geographic map of the country (purple pointers). The distribution of stage 3 and stage 4 extraocular RB is shown in (b) (orange pointers)

Figure 3

Analysis of maternal education level of the study patients among the different geographical zones of the country