Racial differences in chronic pain and quality of life among adolescents and young adults with moderate or severe hemophilia

Abstract

Background and Objective We explored racial differences in adherence to recommended clotting factor treatment regimens, chronic pain, and quality of life (QoL) among adolescents and young adults (AYAs) diagnosed with moderate or severe hemophilia. Methods A convenience sample of hemophilia patients aged 13–25 years completed an online cross-sectional survey in 2012. Chronic pain was measured using the revised Faces Pain Scale (FPS-R) and dichotomized as high (FPS-R≥4) or low (FPS-R<4). QoL was measured with the SF-36. Results Of 80 AYA participants (79 male), most had severe disease (91%) and hemophilia A (91%). Most were white (76%) and non-Hispanic (88%). At the univariate level, compared to whites, non-whites were more likely to have produced an inhibitor against clotting factor treatment (74 vs 38%, p