Scientific breakthroughs in detecting and treating rare diseases are expanding life expectancies for individuals in unprecedented ways.
For an estimated 90,000 people in the United States born with Sickle Cell Disease (SCD), 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). Development of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me, pronounced "Ask Me") was the result of this collaboration. This instrument was designed to meet a number of information needs related to this population, including improving healthcare and informing health policy development.
A recent publication describes the painstaking formative research involving 123 adults with SCD associated with the development of ASCQ-Me:
Another recent publication details the application of AIR’s advanced psychometric technology to the development of ASCQ-Me computer adaptive health assessments:
For more information regarding ASCQ-Me, its development, testing, and how it is currently being used please contact San Keller, Ph.D.