Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)
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.
To explore improved treatments for adults who have SCD, AIR worked with the National Heart, Lung, and Blood Institute to develop the Adult Sickle Cell Quality of Life Measurement Information System, or ASCQ-Me, a patient-reported outcome measurement system that assesses the physical, social, and emotional impact of SCD.
ASCQ-Me asks adults with SCD questions based on in-depth interviews and focus groups with patients. ASCQ-Me questions relate to what people with SCD can do and how they feel, so ASCQ-Me scores could be useful in broadening the focus of treatment to include goals of improving daily functioning and alleviating symptoms.
ASCQ-Me includes questions enabling adults to describe their functioning and well-being according to seven topics related to topics such as physical pain, sleep, and the emotional impact of SCD. View the individual surveys.
Learn more about the measures and the science behind ASCQ-Me.
Why Use ASCQ-Me?
The reasons for using ASCQ-Me are as varied as the users but below we describe three common reasons.
- Health care providers may use ASCQ-Me to complement physiological measures of disease severity. By assessing the broader impact of the disease on emotional distress, ability to sleep, or ability to function socially, ASCQ-Me points to areas of decline or improvement that may be missed by physiological measures.
- Researchers may use ASCQ-Me to understand disparities in functioning and wellbeing among groups of adults with SCD in clinical, health services and population-based research. For example, ASCQ-Me can be used in clinical trials of drug therapy, or to evaluate the health outcomes of patients treated under different healthcare delivery systems, or to identify regional differences in the functioning and wellbeing of adults with SCD.
- Patients may use ASCQ-Me to record how they feel and what they are able to do and to discuss this record with their health care provider and to track changes in their own health over time.
History of ASCQ-Me
In 2002, the National Heart, Lung, and Blood Institute (NHLBI) began a series of conferences and workshops 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 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.
