Sickle Cell Pain Far More Common and Severe than Previously Thought

By Mike Porter

Dr. Wally Smith, video clip #1
Dr. Wally Smith, video clip #2
Dr. Wally Smith, video clip #3

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Pain in adults with sickle cell disease is far more prevalent and severe than previous studies have shown, and most patients manage even severe sickle cell pain at home rather than go to an emergency room or hospital, according to a Virginia Commonwealth University study published today.

The report, published in the Jan. 15 edition of the "Annals of Internal Medicine," could change the way people view pain associated with sickle cell disease and how doctors research and treat the disease," said lead author Wally R. Smith, M.D., professor of medicine and medical director of the Center on Health Disparities at VCU.

Sickle cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent, shape.

PiSCES (the Pain in Sickle Cell Epidemiology Study) required patients to fill out daily diaries for up to six months. Patients were asked to report on their worst sickle cell pain intensity, on a scale from 0 (none) to 9 (unbearable), and whether they were in a sickle cell crisis. They also were asked if they had taken medication for their pain, what kind of pain medicine was taken, if they had gone for an unscheduled physician or emergency department visit or had been hospitalized due to sickle cell pain.  PiSCES analyzed diary entries kept by 232 Virginia patients ages 16 or older.

"We were surprised that a third of the patients said they were in pain nearly every day.  We didn't expect to find that," Smith said. "That revolutionizes the idea of just how big the iceberg of pain of sickle cell disease really is."

Smith said the report, "A Prospective Study of Daily Pain in Adults with Sickle Cell Disease," will lead to changes in the measurement and management of pain in patients with sickle cell disease.

"We need to approach treatment of this disease as if we're treating a phenomenon that's going on all the time. Whatever the underlying processes that are causing pain in sickle cell disease, those are going on all the time," he said. "Those are chronic processes. Our approach needs to be to use medications that either treat chronic pain or relieve its underlying causes over long periods of time, and not simply deal with short-term crises."

Smith and eight other experts authored the report, which is available by contacting Susan Anderson, (215) 351-2653, or via email: sanderson@acponline.org.