The life expectancy of individuals who have sickle cell disease (SCD) has steadily improved over the last several decades. Due to improvements in therapy, SCD has become a chronic health condition that many people manage into old age. Because SCD has evolved in this way, we have a better grasp of acute treatment needs than we have of the long-term needs of adults who live with SCD. In response to these gaps in our understanding, the National Heart, Lung, and Blood Institute (NHLBI) began a series of conferences and workshops in 2002 to determine ways to improve treatment for adults who have SCD. These meetings concluded that there was a need to develop a quality of life (QOL) measure that could be used to assess the impact of SCD on the lives and experiences of affected adults.
NHLBI contracted with the American Institutes for Research (AIR) in 2005 to develop the system. At the time the AIR team began the development of ASCQ Me, no SCD specific QOL instrument existed, so the formative research was inductive. Through a series of structured individual and group interviews with adults who had SCD and their health care providers, 1,213 concrete examples of how SCD affected adult lives were generated. From there, 230 items were created and field-tested to form the ASCQ-Me measure set that consists of both computer adaptive and static (i.e., fixed) scales.