An estimated 90,000 Americans have sickle cell disease (SCD), and increased infant screening, improved disease management throughout childhood, and better therapies have all led to much longer lives for people with this rare blood disorder. Yet, these advances raise new questions about the impact and experience of the disease across the lifespan, as people are now managing this chronic health condition at much older ages than before.
To address this need, the National Heart, Lung, and Blood Institute contracted with AIR and Children’s Hospital & Research Center Oakland to develop an SCD health-related quality of life measurement system that would help to bridge the gaps in understanding about adult SCD patients’ experiences and long-term needs (See video: A Voice for Sickle Cell Disease). The result of the collaboration was development of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me, pronounced "Ask Me"). This instrument was designed to meet a number of information needs related to this population, including improving healthcare and informing health policy development.