Table 2 Example Patient Quotes: Daily Impacts of Sickle Cell Disease (SCD)

Social & Recreational

15 (83%)

I love people, I like to go out and do all different types of things but it does have an impact. It’s kind of hard for me to actually plan things in advance. We used to do that but now it’s like the plans are made at the last minute versus two month from now we’re going to go here because it seems like every time I make plans to go somewhere then I get a pain crisis. Not all the time so I’m the one- I try to find the deals and everything, reserve everything like two months away but I don’t do that now. I make the plans that week or that week before and just pray that everything works out. (002)

Activities of Daily Living

12 (67%)

Well, usually if I’m doing housework, say cleaning, I can’t do it all. I have to— I get shortness of breath. So, if I’m cleaning up, mopping, I’ll mop and then I have to take a breath, sit down for a few minutes and then I can do some more. Because I’ll get tired and have to stop and rest for a few and then I can go back and do some more. (012)

Physical Functioning

12 (67%)

I like to play basketball, but it just prevents me from doing that. Sometimes I just want to stay active, but [SCD] just gives me less energy to, and that just prevents me from staying active. (013)

Work & School

12 (67%)

I’ve worked in the past. They were like little or minor three- to four-hour jobs. I’ve been getting sick for too long. Job has told me, “Well, we can’t accommodate you anymore” because I’m absent frequently. (011)

When I’m having pain and I do go to school, it distracts my―like I can’t concentrate like on the school lesson as much. I get a lot of absences, which also kind of affects my grades. It’s hard to take tests after the lesson has been taught when you weren’t there. (018)

Emotional Health

11 (61%)

I’m not surprised that anyone that I know that has sickle cell doesn’t get depressed. You’re always wondering if I’m going to live another day. (014)

Relationships

8 (44%)

As far as relationships, I guess some people may not understand. It’s kind of frustrating but now I don’t let it bother me. When you say, “I’m hurting” they don’t really know. I told them if you haven’t really been a victim of pain and I’m just saying I’m hurting wherever, you can’t relate because you don’t know. It’s always like “Really, you’re hurting like that?” I’m like, “Yes. I wouldn’t say it if it wasn’t.” (002)