Table 4.

Representative comments from patients with familial hypercholesterolemia in response to free-text questions.

Survey question	Representative comments
What did you like most about the FH Family Share website?	“The design intent is solid, and I did find more information regarding genetic variants than I had found doing research from other sources (Mayo, NIH, CDC)” [Participant 2] “It's nice to have all this information clearly compiled to be able to return and reference, especially for someone like me who has dealt with this diagnosis for most of my life but continue to learn more about it and how it will impact my health and potentially that of my family as I get older.” [Participant 5]
What did you like least about the FH Family Share website?	“There was no content that I disliked - the flow of the site could be improved a bit, as reviewed in the session.” [Participant 1] “Wish more of the links would have been active - but overall, the view and ease to move around was solid.” [Participant 2] “It was boring and not very visually stimulating.” [Participant 8]
What additional information or functionality would you like to see on the FH Family Share website?	“The risk stratification tool based on medications would be an awesome addition to this website.” [Participant 1] “As mentioned, perhaps more information geared toward younger patients, starting a family, thinking about getting children tested/when/why, and how risk can continue to be minimized over a lifetime.” [Participant 5] “Maybe interactive images.” [Participant 9]
What more could we do to improve the FH Family Share website?	“Create more emotional connection to why treatment is so important - perhaps by emphasizing risks. So many young people think they are invincible - as I did, as well - somehow make it more real, since you don't feel the effects of FH until it may be too late.” [Participant 2] “Pictures, diagrams, maybe address the holistic challenges folks with FH have in common.” [Participant 7]