Enucleation Refusal for Retinoblastoma: A Global Study.

BACKGROUND Enucleation (eye removal) is often the only curative treatment for the childhood eye cancer retinoblastoma, yet parental refusal of enucleation commonly contributes to treatment delay and poor survival globally. METHODS Physicians who treat retinoblastoma were surveyed to glean underlying reasons for treatment refusal. RESULTS Refusal rates were higher when less time was spent with parents explaining retinoblastoma/enucleation, and where fewer support services were available. Reasons for refusal included parental belief in alternative treatments, culture, and social stigma. CONCLUSIONS We suggest strategies to increase parental compliance with enucleation and save the lives of children with retinoblastoma.