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Expanding Research and Care
First-Time Study of Pain in Thalassemia

February, 2013 – CHORI Clinical Scientist Dru Haines, MSN, CPNP, and colleagues CHORI Senior Scientist and Hematology/Oncology Director at the hospital, Elliott Vichinsky, MD, and Olivia Oliveros, study coordinator, designed and conducted a new Thalassemia Clinical Research Network (TCRN) study to assess for the first time the severity and prevalence of pain in patients with thalassemia. One of the most commonly inherited blood disorders, thalassemia is a condition in which the red blood cell is impaired, reducing the amount of oxygen transported to the cells and organs of the body. Depending on the severity of the type of thalassemia, patients may be dependent on blood transfusions for survival.

“Our study shows for the first time that pain is a significant problem for patients with thalassemia regardless of the type of thalassemia or hemoglobin status,” says Ms. Haines. “The data clearly call for more research into what is causing the pain, as well as into better pain management strategies.”

“Our study shows for the first time that pain is a significant problem for patients with thalassemia regardless of the type of thalassemia or hemoglobin status.”



Over the last two decades, advances in thalassemia care and management have exponentially increased the lifespan of patients with thalassemia. What used to be an early death-sentence has become a manageable disease that with proper care has allowed patients to live long enough to marry, have children and build full and active lives.

"While this means we're doing a great job of treating the major, life-threatening complications associated with thalassemia and the blood transfusions that often accompany the condition, it also means that new challenges in treatment are emerging, as thalassemia patients are living so much longer than ever before," says Ms. Haines.
“New challenges in treatment are emerging, as thalassemia patients are living so much longer than ever before.”
The new pain study, recently published in the British Journal of Haematology, comprehensively assessed pain in thalassemia patients for the first time, utilizing patients from the TCRN, a National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI) funded network composed of five core thalassemia centers in North America, of which Children's is one. Utilizing patients from the core TCRN centers and their satellite sites, the study enrolled 252 thalassemia patients aged 12 to 71 years.
The results were quite striking, with 64 percent of thalassemia patients reporting having experienced pain in the previous four weeks, 22 percent of whom reported pain on a daily basis. Thirty-nine percent of those patients reporting pain also rated their worst pain as severe. In addition, 81 percent reported having pain for one year or more, and 31 percent for five years or more.

"These are very high numbers, more in line with patients suffering from neuromuscular disorders than with the general public," says Ms. Haines. "Pain was a significant factor for thalassemia patients across all types and hemoglobin status, with age being the only independent predictor of pain."

In fact, 57 percent of patients age 35 years or older reported pain in the last 7 days, compared with only 8 percent of patients ages 12 to 18 years.

"As thalassemia patients age, pain is clearly more prevalent, more severe, and occurs in more locations. Pain also appears to be under-treated, with 75 percent of our study participants reporting no relief with pain treatment," Ms. Haines says.

"Now that patients are living longer and more fully, we clearly need to expand both our treatment and our research beyond the basics of managing the more urgent health needs of these patients. Our study clearly shows that we need more research on what might be causing the pain in thalassemia patients, as well as more research that targets improved strategies for pain management."

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Monday, May 20, 2013 3:21 PM

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