Table 3 Example Patients Quotes: Sickle Cell Pain Crise is (SCPC)

Pain

14 (78%)

Sometimes I get a slight feverish feeling, then I start getting these little pins and needle pains that start out. Usually it’s isolated, or sometimes it moves up to my whole leg, or part of my leg. I pay attention to, “Oh God. I pray it doesn’t spread all over.” Usually if it’s an isolated thing, I pay attention to those things. I do notice I get feverish. I get sharp pains. Extremely tired. I’m out of breath. I just get extremely weak. My oxygen levels are low, so I have to drink water. I’m not thirsty, but I have to drink it. I just feel like crap. You just know when it’s going to happen. It creeps up on you. (014)

Fatigue

11 (61%)

Impacts of SCPC

n (%)

Representative Patient Quotes

Work & School

16 (89%)

I have worked through a crisis before. Because sometimes I’m OK in the morning. I feel a little tired and sluggish but, I’m like, “I’m not going to call out.” And then I would go in and then after I’ve been working for a couple of hours, I’m like, “Oh, this today.” And it would start sometimes in my back and I would be like, “Oh, God.” And it’s so busy and I can’t just leave. So, I’m just sitting there working through it and I’m taking something strong but, not Oxycodone because you can’t take that at work and I’ll be sitting there dozing off. So, I’ll take something and just keep drinking Gatorade because that’s the only thing I can do. (012)

Emotional Health

15 (83%)

Well, emotionally it’s like, “Why is this happening?” I feel like I just sometimes I just want to cry. I can’t deal with this. I don’t know why this is happening. I thought I did everything I was supposed to do. And it’s still here anyway. But, what can I do? It makes you sad. But, what can you do? You just try to fight through it. (012)

Sleep

15 (83%)

If I’m in pain, sometimes it’s difficult to fall asleep because the pain is so intense. Sometimes, depending on the pain medication I take it will keep me up. Like I take Percocet and I’ll fall asleep for maybe two to three hours and then I’m up again. With the medicine that they give me in the hospital, I’m always just in and out of it. I might be awake for a period of time and just nod off. (001)

Medication Use

14 (78%)

If I am having a crisis there a medications I have to increase, then there’s going to be medications that I’m going to have to take as well that I don’t take regularly. (002)

Physical Functioning

13 (72%)

Pain crises can be paralyzing at time. A minor pain crisis, I am good, I can move around, and be a little slow, but I can move around, but in a severe pain crisis, it’s dying. (003)

Activities of Daily Living

13 (72%)

Pain crisis, a mild one, I would say allows me to do the normal activities. I would consider that a pain of, for me, anything less than a 7. So, on a scale of 1 to 10, anything less than for me personally 7, I can still kind of function. I can take pain medication as far as like an ibuprofen or a Bayer, and it still allows me to do basic functions. (011)