Table VII.

Participants’ Suggestions for Health Care Providers Caring for Girls and Women with Turner Syndrome

Suggestions	Quotations
Strive to diagnose early	“I mean, I guess it’s good to know right offhand because then it’s not a big shock and you can, you know, not necessarily totally get over it, but deal with it and become comfortable with it and, you know, not fret over it.” (Age 20)
Improve both understanding of Turner syndrome and how to care for women diagnosed with this condition	“I think the main thing is, keep yourself informed, especially if you have a patient with Turner syndrome. You know, get informed. I think we need to have a lot more awareness. Like I said, once you get my age, there’s nothing as far as medical care for Turner syndrome.” (Age 45)
Keep patients and their parents up to date with information about Turner syndrome	“But I would definitely do the research for the person and give them a lot more information, whatever is out there, as much as possible. Give them any options that are there, have resources there available where basically I did—you know, I found the resources, I did my own research. But as a physician, I think you should be able to get that for that person. I mean, I know Turner syndrome is not that common, but it’s also not that rare.” (Age 33)
Be more attentive, sensitive, positive, and encouraging	“To listen. Listen thoroughly before they try to give an answer, you know. Listen to what that girl with Turner’s, or that woman with Turner’s is saying, and then answer and talk about it. Don’t jump to an answer right away, like my doctors did, you know. Hear them out. If an examination is needed, then do an examination, you know.” (Age 47)
Engage in open and honest communication with patients and their parents	“I wish they would have just told me, this is why we’re testing your blood. This could be the case or this could be the case. This is what we’re doing…So that people get a little time to let it sink in before they actually get the results.” (Age 32)
Offer girls diagnosed with Turner syndrome human growth hormone and hormone replacement therapy at the appropriate times	“ But I think, for those that they can get growth hormone to help stay somewhat an average height with their peers, along with taking the hormones so they develop at a similar rate, that can help a lot with not feeling quite as different growing up.” (Age 37)
Educate patients in a developmentally appropriate manner	“Well, when I first—I think knowing about Turner’s was like the first thing I remember being told, you know, that’s why you’re going to be shorter than other kids. Then sort of like as I grew in my ability to understand and my parents told me more about it.” (Age 39)
Put girls and women diagnosed with TS in contact with the Turner Syndrome Society	“So I went over to the clinic that I had been as a kid and gave the doctors both notes with my name and phone number, and said, we have this society. If you have any patients, feel free to refer them, kind of thing.” (Age 37)
Offer Counseling	“…[T]he one thing they offered that was real helpful was a lot of literature about it. They offered, like, counseling for Turner Syndrome kids, support groups, you know.” (Age 27)
Involve the parents	“Make sure the parents are armed with enough information to help the child.” (Age 19)