Table 2.
Representative comments from genetic counselors in response to free-text questions. (Participant 4 did not provide free-text responses in phase 2.)
| Item | Representative comments | |
|
|
Phase 1 | Phase 2 |
| What did you like most about the FH Family Share website? | “Solid basic information. Good patient reading level.” [Participant 4] “The education materials, getting contact info for the clinic.” [Participant 5] “The importance of informing family members and assistance to do this, especially the email.” [Participant 8] |
“It was interactive and user-friendly. I think this will provide patients with a good tool to learn more about FH and how to easily share this information with their relatives.” [Participant 2] “Nice resource for families including the ability to share the resource and family letter within the website” [Participant 6] |
| What did you like least about the FH Family Share website? | “Ensure appropriate nomenclature is being used for heterozygous vs. homozygous FH.” [Participant 1] “Add more infographics about inheritance, genetics etc” [Participant 3] “The order of the modules under learn and the ambiguousness of ‘Discover’” [Participant 8] |
“Images could use work” [Participant 1] “There is a lot of clicking into different tabs” [Participant 3] |
| What additional information or functionality would you like to see on the FH Family Share website? | “Personalization of email tool.” [Participant 2] “Next steps” for family members, how to find provider, how to share info with family.” [Participant 3] |
“Use for other health care providers w/ limited experience in FH, incorporate Dutch Lipid Network, etc” [Participant 7] |
| What more could we do to improve the FH Family Share website? | “More meaningful Images.” [Participant 6] “A little more information about the About Me tool would be helpful prior to them starting it.” [Participant 7] |
“Again, nothing further to add. Looks great!“ [Participant 2] “Make thing as concise as possible” [Participant 3] “Define terms or link to where they are defined.” [Participant 5] |