Health‐related quality of life in adults with sickle cell disease (SCD): A report from the comprehensive sickle cell centers clinical trial consortium

Adults with Sickle Cell Disease (SCD) experience multiple disease-related complications, but few studies have examined relationships between these events and health-related quality of life (HRQOL). We determined the number and type of previous or co-occurring SCD-related complications and their reported HRQOL in a cohort of 1,046 adults from the Comprehensive Sickle Cell Centers (CSCC). Participants had a median age of 28.0 years (48% male, 73% SS or Sβ0 thalassemia) and had experienced several SCD-related complications (mean 3.8 ± 2.0), which were influenced by age, gender, and hemoglobinopathy type (P 0.05 for any of the trees. An ordinal logistic model was used to examine the relationship between the SF-36 general health scale (5 points) and the SF-36 change in perceived health scale (5 points) controlling for age, gender, phenotype, antidepressant use, use of opioid analgesics, and the presence of AVN, ulcers, VOC, or asthma. The relationship between each SF-36 subscale and age, gender, phenotype, antidepressant use, use of opioid analgesics, and the presence of AVN, ulcers, VOC, or asthma was estimated using an F-test from a linear model. Additional Supporting Information may be found in the online version of this article. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article. Carlton Dampier*, Petra LeBeau†, Seungshin Rhee†, Susan Lieff†, Karen Kesler†, Samir Ballas‡, Zora Rogers§, Winfred Wang¶, * Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia, † CSCC CTC Statistical Data Management Center, Rho Federal Systems Division, Rho, Inc., Chapel Hill, North Carolina, ‡ Division of Hematology, Thomas Jefferson University, Philadelphia, Pennsylvania, § Department of Pediatrics, University of Texas Southwestern Medical Center, Dallas, Texas, ¶ Department of Hematology, St. Jude Children's Research Hospital, Memphis, Tennessee.