Assessment of Pain in People With Thalassemia

• Prevalence of pain in participants with transfusion and non-transfusion dependent thalassemia [ Time Frame: Measured at Month 9 ] [ Designated as safety issue: No ]
  

• Common sites of pain by age, gender, and diagnosis [ Time Frame: Measured at Month 9 ] [ Designated as safety issue: No ]
  
• Pain severity and influence of age, gender, or diagnosis [ Time Frame: Measured at Month 9 ] [ Designated as safety issue: No ]
  
• Impact of pain on functioning and well-being [ Time Frame: Measured at Month 9 ] [ Designated as safety issue: No ]
  
• Effectiveness of treatment and medication over time [ Time Frame: Measured at Month 9 ] [ Designated as safety issue: No ]
  
• Correlate the Brief Pain Inventory (BPI) and Adolescent Pediatric Pain Tool (APPT) in the adolescent population [ Time Frame: Measured at Month 9 ] [ Designated as safety issue: No ]
  

Thalassemia is an inherited blood disorder in which the body makes an abnormal form of hemoglobin—the protein in red blood cells that carries oxygen. People with thalassemia often experience fatigue, shortness of breath, and pain. Recent medical advances in treating people with thalassemia who receive regular blood transfusions—a standard procedure that refreshes the healthy red blood supply—have resulted in increased life spans for these people. However, with the extended life spans have come additional issues, including pain. There have been no previous research studies that have examined pain levels in people with thalassemia, and as a result, the sources and prevalence of pain remain unknown. The purpose of this study is to assess the prevalence and severity of pain, common pain sites, and the impact of pain on functioning and well-being in people with thalassemia who receive regular blood transfusions and people with thalassemia who do not receive regular blood transfusions.

This study will enroll people with transfusion-dependant thalassemia and people with non-transfusion-dependant thalassemia. At a baseline study visit, participants will complete a demographic questionnaire and a pain assessment questionnaire. At Months 3, 6, and 9, study researchers will telephone participants to go over the same pain assessment questionnaire again.