Table 4.

Summary of Themes

Category	Subcategory	Theme
Experience with retinoblastoma	Personal/Individual	Retinoblastoma has routine medical, visual and psychosocial consequences
		Patients adapt and persevere
	Medical care	Patients are satisfied with their primary retinoblastoma care
		There are areas of care which can be improved
	Community	The retinoblastoma community is a source of support
		Connecting to the retinoblastoma community can be challenging
Knowledge of retinoblastoma		Patients rate their personal knowledge of retinoblastoma as above average
		Patients recognize certain limitations to their knowledge of retinoblastoma
		Patients act as knowledge brokers
		There is a need for high‐quality trusted sources of retinoblastoma information
Research engagement		Patients are motivated to engage in research
		Past research engagement is limited to passive participation or advocacy
		There are significant barriers to participating in research