Table 4.

Participant recommendations

Recommendation	Quote #	Supportive quote
Lay summary provided by testing facility	18	“…And explain that the rates are low even among those under 50 or 60. But still to go through that information, and then have it so that they can sort of read it. So something that has like a basic definition of Lynch syndrome, a description of sort of the incidence rate of it, what it would mean in terms of passing that on to your children, and what it would mean for siblings, other family members. Because I know that while I was going through the testing my sister was, you know, stressed out wondering if she should be getting checked out too. And it turned out all to be negative in my case, but it would just be good to have that information up front for people…” (005)
	19	“Something to send to the family members…what the results were, what this means for them, and, you know, what the next step is for them…” (017)
	20	“For family members who you may not even be that close to get the message, sometimes having a form is more helpful, having to call everyone or email…” (018)
Advice for communicating with family	21	“Other people's stories. That maybe, to know what they experience. I think I looked at something like that on the internet, but I would like to have something that is brought by the system, by the medical system where people say this is what happened when I told my children or, you know, my siblings and their reaction. And I think something like that would have helped. To be prepared of what the possibilities are” (014)
	22	“…you have to have the conversation with them. You can't just send them an e‐mail…So, something maybe around coaching people on how to tell family might be a little bit more useful”. (009)
	23	“I think it would have been good to sort of address that piece, like how to approach your children about ‐‐ regardless if they’re positive or negative…a pamphlet on how to talk to children?”(020)