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Table 3 Direct quotes from ITP patient focus groups

From: Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective

Biological Variables ▪"like a rollercoaster"
▪" [platelet levels] go way up and then way down"
▪ "[The fact that] you're sick now but you'll be okay in 2 days or 2 weeks... was a particularly difficult area for me to handle."
▪ "[After splenectomy] my platelet count went up to 500,000 right after splenectomy, a month later it was back down to the teens."
Main Determinants
Signs & Symptoms ▪ "Fatigue is [the] number one [issue] for me."
▪ "I guess the worst was probably ... when I had a lot of bleeding in my mouth. I hate when I taste blood."
▪ "I'm bruised all the time and I'm pretty used to it now. It's very annoying, but it's just a way of life now."
▪ "I've had about three really heavy duty nosebleeds lasting several days and you just have to immobilize yourself and hope that the clot will finally hold."
▪ "I get bruises now and then. I do have petechia most of the time on my legs"
Treatment Effects ▪ "I won't take it [steroids] and my count is 3 and I won't take it because my quality of life means too much and I already don't feel good."
▪ "I'm very susceptible to illness, colds, and lung problems. I've become fanatical with germs. I don't touch things."
▪ "It's like rocket fuel. All of you know who've done steroids, it's terrible stuff. I think steroids are the worst. steroids were worse than the chemo drugs were."
▪ "If I would have heard 50/50 [chance of success/failure] I wouldn't have done it. That 70/30 sounded really good to me."
HRQoL Domains
Emotional Health ▪ "The thing about families is they look at you and expect to see you being strong. I feel like they expect me to be able to deal with this."
▪ "The worst part about it is the emotional strain that was put on everyone around me."
▪ "There [are] times that I won't go to the doctor because I know that I can't afford to go."
▪ "I have that fear [of accidents]. I always make the sign of the cross because I know if I get banged up I'm gonna bleed."
▪ "When you're in a flare you just feel off in a corner by yourself and you're isolated from everyone."
Functional Health ▪ "I get so tired I can't even move."
▪ "I never sleep through the night. It's just restlessness and you're not comfortable."
▪ "You're limited. You don't do what you used to do to the same degree and you'd still like to do that but you can't do it."
▪ "When cooking...you have to be very careful. You have to really take your time when you're cutting."
Work Life ▪ "I loved working but the fact that I have to sleep when I'm not working makes me want to work less so that I can do something besides sleep."
▪ "Now I'm a technical writer, which has no [bleeding] risk at all. I just sit at the computer and type. I really don't like it, but I don't have too many options."
▪ "I had to take off a lot to go to the hospital to get the treatment."
▪ "I wanted to be a nurse but I couldn't because I had ITP."
▪ "Working part-time."
Social & Leisure Activities ▪ "My friends think I'm crazy because I won't go the movies with them on a Friday night. I'm just so exhausted when I get home. I don't have the energy to get dressed and go to a movie."
▪ "My bruising bothers me especially in the summertime when I can't [go swimming] because I'm always bruising and people look at you funny."
▪ "I've had co-workers and friends ask me if my husband was beating me."
▪ "When you're bruising, especially during the summer, and you have to go outside and you're so self conscious because you know what people are thinking because they automatically just assume, oh boy she's been beat."
▪ "Well, I find myself more reluctant about meeting new people because I have so many bruises so often."
▪ "I don't go jumping off planes. I don't even want to swim in the water. I just don't want to get hurt. I'm very fragile now."
▪ "I said, Don't look at me to go anywhere. I'm not leaving New York."
▪ "I always take out traveler's insurance now for cancellations."
▪ "We used to do extensive traveling and we've limited that down to a week or less at a time any more and we don't do as many of them as we used to."
▪ "With my grandchildren, they want to jump on me. They want to do a lot of things. I want to do a lot of things with them. My daughter tells them 'Don't jump on Grandma. Don't pull her hair. Be careful.' That really bothers me."
Reproductive Health ▪ "When I first got ITP I thought that I couldn't have children. And then my gynecologist told me that I could have children while taking prednisone. All those years my hematologist made me think I couldn't have children."
▪ "You have to be cautious...If I had sexual relations [I was afraid] something was gonna happen to me."
▪ "I don't feel sexy. I don't know if it's the weight gain or if it's the stigma of being sick."
▪ "When my platelets are low I say "Stay away." [regarding sex]"
▪ "Much heavier [periods] and lasted anywhere from 6 to 9 weeks"
▪ "Now on the prednisone my desire has went [sic] down considerably. I swear I used to be sexually active 4 or 5 nights a week, now it's once or twice a month."