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ABSTRACT
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.
ACKNOWLEDGEMENTS
The authors would like to acknowledge the support of the physicians who participated in the survey, and Dr Timothy W. Corson who provided some assistance in the editing of this manuscript.
DECLARATION OF INTEREST
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.
Supplementary Material Available Online
Supplementary Survey Questionnaire
Supplementary Tables 1, 2 and 3