Visual functioning in adult survivors of retinoblastoma.

Abstract

122 Background: Retinoblastoma (Rb) survivors are at risk for adverse oculo-visual outcomes. Limited data are available regarding long-term visual functioning among adult Rb survivors. Methods: Rb survivors, diagnosed from 1932–1994 and treated in New York, completed a comprehensive questionnaire that included the National Eye Institute Visual Function Questionnaire (VFQ-25), which measures self-reported vision-targeted health in individuals with chronic eye diseases. Items are scored from 0–100 with 100 representing the best possible score. Results: 470 adult Rb survivors participated (53.6% with bilateral disease; mean age at study 43.3 yrs, standard deviation [SD] 11); 86% had at least one eye removed (one eye: 74.5%; both eyes: 11.5%) and 53.4% were treated with radiotherapy. 61.3% rated their eyesight as excellent/good while 16.5% reported complete blindness. Among Rb survivors with some vision, 4% described staying home “most of the time” due to their eyesight and 12% reported often feeling frustrated due to their visual status. The overall VFQ composite score for all Rb survivors was 89.2 (SD 10.1) [unilateral Rb survivors: 92.2 (SD 6.3); bilateral Rb survivors: 84.1 (SD 13.0); p < 0.001).Survivors with bilateral disease were significantly more likely to report inferior visual functioning in all domains when compared to those with unilateral disease (Table 1). Conclusions: Rb-related ocular problems continue to impact survivors’ functional status into adulthood, particularly among those with bilateral disease. [Table: see text]