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The researchers are working on capturing the voices of sickle cell patients primarily through interviews. Schneider – who has worked on the project since its inception – said they wanted patients to talk about their disease in ways that were natural for them.

“When doctors understand a disease, they understand it through seeing the body as almost a machine, so when patients talk about the disease with doctors it’s natural that they talk about it in that way,” Schneider said. “So what we’re trying to do is to capture the language patients use to describe that disease [in a different context].”



Patil is especially glad that the research has lasted as long as it has for her students’ sakes. She said she continues to pursue research that interests her and the project gave her students the rare undergraduate opportunity to pursue the research that interests them.

“We did it as a teaching methods course, and then it just snowballed after that,” she said. “We were just finding such interesting results and talking about the experience of pain, which is so hard to capture.”

When a sickle cell patient’s sticky, C-shaped cells clog a blood vessel, they prevent oxygen from being delivered to body tissues. This can lead to organ damage and even death. Anemia is one of the common symptoms of the condition. But the most common symptoms are intense episodes of pain that still baffle medical practitioners. The pain is typically treated in emergency room settings with opioids, extremely strong pain-relief drugs.

“Pain is a subjective experience, but, when you are a person [who] has sickle cell, you’re in health care systems a lot. You’re getting treated for pain,” Patil says. “When you go to the ER as a black person, asking for strong opioids … you’re labeled as a drug seeker.”

To remedy this issue and allow patients to bypass the emergency room, UIC’s Sickle Cell Center recently opened an Acute Care Treatment Center. The center provides a daytime alternative to emergency room treatment for patients who are experiencing pain crises.

But when Patil and her students interviewed patients about their personal experiences with pain, they encountered a problem.

“Most patients know it exists, but we found through our discussions that they didn’t know what services are offered there and all the ways they can use them,” Schneider said.

To raise awareness, the Acute Care Treatment Center had a grand opening recently, even though it had already been open for a few months.

Molokie said the anthropologists also discovered that the patients were afraid of becoming addicted to opioids, something he said is not a risk at prescribed dosages. But, as a result of their fears, many patients were not taking their medication.

“Physician-wise we haven’t done a good job of explaining the risks of addiction,” Molokie said. “I never even paid attention to this issue of patients’ before. I think just that is hugely significant.”

Crediting Patil’s and her students’ research, Molokie and his colleagues have learned to speak to their sickle cell patients in more accessible terms and to explain concepts more clearly – including the Acute Care Treatment Center’s services.

There is quite a bit more reading before and after the above quote at this link:

http://news.medill.northwestern.edu/chicago/news.aspx?id=162040