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Living Life in the Face of Illness
New Study Assesses Education and Employment Status in Thalassemia Patients for the First Time

In a new Children's Hospital Research Center Oakland study conducted through the Thalassemia Clinical Research Network, former CHORI clinical scientist and first author, Zahra Pakbaz, MD, CHORI clinical scientist Marsha Treadwell, PhD, and CHORI scientist and hematology/oncology director, Elliott Vichinsky, MD, and their colleagues evaluated for the first time the education and employment status of thalassemia patients.

“Quality of life is a new issue in the field of thalassemia treatment because patients now are finally surviving long enough that these questions are relevant,” says Dr. Pakbaz.
“All the focus in the past has been on improving longevity of life. Now we can look at making these longer lives happier and healthier.”

A genetically-based blood disease in which the bone marrow is not able to produce red blood cells and hemoglobin to transport oxygen throughout the body, thalassemia most frequently requires treatment with regular blood transfusions. Although a life-saving measure, blood transfusions also cause an accumulation of iron in the body's organs and tissues.

"Before the 1960's, we had no way of getting rid of that excess iron and regularly transfused thalassemia patients died as young as five or six years old," explains Dr. Pakbaz.

The year 1960 marked the development of the first chelator a drug that removes the excess iron from the blood. Though revolutionary, it involved subcutaneous infusion over eight hours, five nights a week. Oral chelators have only become available in the last 20 years, and have resulted in dramatic improvements in treatment outcome.
“Now we have transfused patients living into their 40's and 50's, which means we can begin to ask questions about how to improve quality of life as a patient with a chronic illness." ”
One of the first questions for Dr. Pakpaz was how well thalassemia patients were doing in terms of education and employment status.

"Education and employment are some of the most important components to overall quality of life," Dr. Pakbaz says. "We derive a great sense of satisfaction and self-worth from having a good job and a good education."

The complexity of thalassemia requires a team of physicians and nurses from different disciplines to work together with patients to make sure they receive blood transfusions every two to four weeks, regular chelation therapy, and any other treatments to address complications that might arise. Even a minor infection may result in hospitalization because thalassemia patients have weaker immune systems.
"When a health issue requires so much time and effort just to maintain a baseline, it makes sense that a patient's ability to hold full-time employment or attain higher education might be impacted," says Dr. Pakbaz.

The new study showed that thalassemia patients actually faired better than the general U.S. population in terms of access to education, with 86 percent of children with thalassemia at or above their expected grade-level, and adults with thalassemia far exceeding the general population in terms of college and post-college studies (61 and 14 percent vs. 25 and 8 percent).

"The education data were very encouraging," says Dr. Pakbaz, though she does suggest that further research is still needed due to the possibility of selection bias in the study because participation was on a volunteer basis. Either way, however, Dr. Pakpaz says the study is good news.

"The study shows that many patients can cope with the challenges to education and find solutions to them, perhaps through in-hospital schooling or home-schooling," says Dr. Pakbaz. "This means that the resources are there for thalassemia patients to access education."

The full-time employment status data indicate significant room for improvement, however, with only 67 percent of employed thalassemia patients working full-time, as compared with 76 percent of the general U.S. employed population.

"This study clearly shows that we need to explore full-time employment in thalassemia more to find out why this is happening and to figure out ways of better supporting thalassemia patients so that we can improve their employment status," Dr. Pakbaz says.

While only the beginning of the investigation into thalassemia patients' quality of life, this new study is a critical step on the way to helping patients cope even better with their rigorous treatments so that they can lead the most independent and active lives possible.

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Tuesday, May 17, 2011 8:19 AM

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