Blinding Retinopathy of Prematurity in Western India: Characteristics of Children, Reasons for Late Presentation and Impact on Families.

OBJECTIVE: To ascertain why children with end-stage retinopathy of prematurity (ROP) become blind, and to explore the impact of blindness on families. DESIGN: Mixed quantitative and qualitative methods. SETTING: Tertiary-care eye hospital in India. PARTICIPANTS: Children with end-stage ROP and their carers. INTERVENTION: Cases presenting between June 2009 and July 2016 were identified from medical records and data extracted. Carers were contacted for missing information, if required. Data were analyzed to explore where failure had occurred in the process of screening and treatment. A subset of carers were selected for in-depth interviews to explore the impact of having a blind child. Interviews were recorded, transcribed and analyzed using a thematic framework. MAIN OUTCOME MEASURES: Parental perceptions. RESULTS: 66 children were included: median age 4.3 y (range 3 mo- 6 y), 58% boys. 74% were blind due to 'screening failure', which was associated with lower maternal education (P=0.03). Of the 17 case of treatment failure (24.6%), majority (12, 70%) had aggressive posterior ROP. A subset of carers of 18 children (50% boys) were interviewed, mostly mothers. Most reported impoverishment as a result of having a blind child, and many reported lack of access to special education, negative attitudes of others and concerns about the future. CONCLUSIONS: Screening for retinopathy of prematurity needs to be expanded and counselling improved. Access to special education and rehabilitation need to be improved.