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Table 4 Patient comments (n = 52) regarding the co-created materials

From: Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism


Representative quote(s)


n = 19

• “I was very impressed and I think my friends and family will find it easy to understand”

• “I am glad that there is a clear male/female explanation. Often materials I find focus predominantly on the males”


n = 11

• “Elaborate on infertility and treatment”

• “I think you may be under discussing the life-long emotional and psychological impact”


n = 10

• “It felt like the pages were a bit full but I can appreciate it must have been hard to provide all the information necessary in only 5 pages”

• “I think if there was a way to click on each section for more detailed info that might help”

Personal concerns

n = 9

• “Other rare conditions that can also be evident in patients with KS/CHH… …Explain that patients can have additional illnesses besides KS/CHH”

• “It might be helpful to state that anosmia is permanent. Of course it is most important to focus on the hormonal component, but there are definitely considerations in dealing with anosmia as well”


n = 3

• “It would be great if you could translate into several languages to reach more people”