Table 4 Example Patient Quotes: Healthcare Utilization during SCPC
From: Content validation of a self-report daily diary in patients with sickle cell disease
Reason for Non-utilization of Healthcare for SCPC | n (%) | Representative Patient Quotes |
|---|---|---|
Stigmatization by healthcare professionals | 7 (39%) | Sickle cell patients, we have big issues with the hospital because we get accused of drug seeking discrimination. When you go, you’re supposed to get treated immediately. Sometimes we’re waiting in the emergency room for six hours before you can get pain medication. So, if you kind of feel a pain crisis coming on, you’re taking your medicine at home but that doesn’t work. So, now, you’re going to the ER. But now, I have to wait six hours before I can get pain medication…So, once that happens for us too many times, we can be in the worst pain. And we rather sit home and attempt to treat it at home first before we want to deal with any of that. (011) Sometimes they’re like, “Well you’re having a crisis.” “Yeah, I know. That’s why I’m here.” And it’s like, “Well, how do you feel?” And to me it’s always 10. If I’m in there it’s because I can’t control it anymore, or I’ve taken everything I can take. (021) |
Long wait times at hospital | 5 (28%) | |
Ineffective treatment options | 4 (22%) | |
Lack of clinician knowledge on SCPC | 3 (17%) | |
Racial discrimination | 2 (11%) |