Table 2.

Impact of hemophilia on teens and young adults.

Disease Impact	Major Findings	Exemplar Quotes
Physical	Impact of pain associated with bleeds and with regular venipuncture Some perceived minimal physical impact largely because hemophilia is easily treated by prophylactic treatment Some learned about physical risks through individual experiences and seeking information from their health care team, family, or friends with hemophilia	Well its actually been quite a challenge, always getting needles probably like every Tuesday and Thursday...it’s been kinda difficult. [Age 12]
		I sprained my ankle when I was in grade 4...[that joint] started to bleed a lot...there was more risk involved, like cartilage problems [and] like chronic pain...which is not something that would easily happen to someone without hemophilia because it clots. [Age 14]
		Well, luckily, I did have an older brother and I did learn a bit from his mistakes, but I mean obviously, you want to try things. [Age 17]
Emotional	Main cause of emotional upset was not being able to play sports or having to miss out on activities or extracurriculars	It’s impacted my life a lot, sometimes it’s hard to deal with. I can’t play any contact sports, and sometimes seeing your friends playing sports...it’s definitely an experience, but you do learn to deal with it. [Age 17]
		Everyone kept telling me...you’re very fragile, in fact, when I was a kid, I felt more like a glass vase...because I was afraid that I would break out to a bleed. [Age 18]
		I can’t really do much...like...a lot sports, like hockey or football, because if I get hurt really badly I would end up in the hospital. [Age 12]
Social	Inability to participate in certain activities limited social interaction with friends Feelings of isolation because participants did not feel comfortable explaining their condition to peers Having hemophilia gave some participants an opportunity to create strong bonds with family members and peers who have the same condition	Probably the only one big challenge that I have faced is like doing stuff with friends. Like sometimes friends are doing stuff that I wouldn’t participate in and it would feel a little bit sad...I just kind of accepted it and my friends have been really understanding about it. [Age 14]
		You felt sometimes you didn’t want to tell people if you had it...you didn’t want people to treat you differently...I kind of kept to myself when I was really young. [Age 20]
		I have a younger brother he also has hemophilia. We connected [and] it was great...With my parents...I got to see how caring they were. They were out almost all day out at the hospital rooms or emergencies all the time. [Age 20]
School and Work	Majority felt having hemophilia did not impact their school attendance, as teachers were accommodating and supportive, but some decreased their participation in physical education due to risks Of those currently employed, most did not disclose their condition as they felt it did not interfere with their position and there was no high risk of injury at work	Well in school, in gym, sometimes I have to skip out on some of the activities, because they’re a little too...rough for me to play. [Age 14]
		Yea, my boss knows I have hemophilia, she understands what’s happening, she’s you know um, considerate about it, she understands I won’t be able to work for a while. [Age 17]
Future	Most did not envision hemophilia having an impact on their career path, aside from avoiding physically demanding careers Expressed a need to choose postsecondary institutions where easy access to medical services was available No major concerns about hemophilia affecting future romantic relationships or having children	I’m pretty sure it won’t affect my future career, but it could limit my career, like since I can’t do much, most of the hard work. [Age 17]
		Going to the future...if I do have kids, you know the females would be carriers and the males would be unaffected that’s fairly okay. I don’t mind passing on the gene. I could deal with that. [Age 20]