An Eye Opener: Lessons Learnt in Retinoblastoma Awareness and Screening Program

Background: Retinoblastoma is most common intraocular malignancy of infancy. Globally screening is recommended for ‘at risk’ children. Despite knowing this, Indian Cancer Society undertook general screening at behest of a corporate donor. Scenario in India is challenging as children at rural, urban slums are not routinely screened for any of eye disease. ICS implemented the pilot project among underprivileged children with primary aim of spreading awareness and improve the ocular health. Though expected outcome was zero retinoblastoma suspect cases; based on past projects it was expected that other eye conditions like squint, cataract etc. would be identified in a few. Aim: To screen 4500 children below 4 years of age at Indian rural and suburban slum areas. To create awareness about retinoblastoma and other eye conditions in community. Methods: Locations were identified where literacy, awareness, immunization coverage were low. Partners were selected a team of experts (ocular oncologists, pediatric ophthalmologists, optometrists, paramedical staff) were deployed for implementation. For awareness, all parents coming for the immunization, Aaganwadis and preschools etc. were given a talk on the importance of child eye screening and various disease which can be detected and prevented through simple eye examination. Special community level programs planned to create awareness about retinoblastoma and early childhood eye screening. Brochures and pamphlets were to be given in the vernacular language of the region. Screening for retinoblastoma was planned in 2 phases, those found to have positive red reflex in stage 1 are subjected to dilation, after obtaining consent from the parents. Proformas were filled in and treatment was given as per the pediatric eye disease identified. Results: In 5 months 2450 children were screened, at tribal area and in suburban slum areas. Awareness sessions were conducted for 348 mothers in batches at the tribal area and similarly for mothers and teachers at Anganwadi, schools. None of the parents/teachers were aware about cancer of eye. A thorough eye check-up was done based on the suggestions of the American Association of Pediatric eye diseases and special attention was given to tests such as Bruckners test. Number of children suspected of retinoblastoma was nil, however, 6% children were found to have other eye conditions such as congenital cataract, corneal opacity, refractive errors, squints and ptosis in the tribal area and project is ongoing in suburban area. Treatment was given as per the protocol for same. Conclusion: Screening for retinoblastoma for not at risk children is not recommended. Main aim for implementing retinoblastoma awareness program is to integrate it with immunization or nutritional program in India. This would ensure standardized ocular care. Challenges are numerous, such as lack of infrastructure, poor literacy rates, low income levels. Yet, innovative strategies are needed for better impact of awareness programs.