Table 4.

Themes on Participant Thoughts on Educational Materials

Theme/Category	Summary and Quotes
Information on GTT trials	• Participants felt that presenting longitudinal outcomes in large human samples would give them more confidence in the reported safety, efficacy, and side effects of GTT (“it might be safe now, but it’s so much stuff they [the FDA] has approved and ….recalling back”). • Participants were concerned that there might be undiscovered side effects or risks that would impact their decision making (“off the top of your head, as a doctor, what would you think would be the [other possible] side effects?”).
Personalized information about GTT	• Participants wanted information on how their SCD treatment history might impact GTT and assurance their history would not reduce GTT’s efficacy or increase GTT-related risks (“what if you’re on something other than hydroxyurea before transplant, blood thinner, vitamins;” “would one treatment affect another one.”).
No information on HIV	• Participants felt that describing details about the HIV vector created more questions and uncertainty about GTT (“it makes the treatment sound more scary”). • Participants were concerned if information about the vector’s origins is going to be shared, then materials should reiterate that the viral vector is manufactured in a lab without the virus ever being present (“because it was never in the shell;” “don’t say the HIV virus is taken out [of the shell]”).
Clear and helpful (Feedback on the GTT educational brochure)	• Participants recommended the use of illustrations in addition to text (“especially for visual people, I like to see things.”) helped them further understand GTT. • Participants were not overwhelmed by details on the GTT process, risks/side effects, and comparison with other treatments; they noted the importance of transparency (“[I] appreciated the honesty;” “don’t sugar coat nothing”).