ASCQ Me - sporedata/researchdesigneR GitHub Wiki

General description

Adult Sickle Cell Quality of Life Measurement (ASCQ-Me) developed a set of self-report measures for use with adults with sickle cell disease. These measures assess mental, physical, and social health and provide information about the severity of one’s disease.

ASCQ-Me offers three types of instruments:

• Short Forms fixed set of 5 items or questions for one domain.
• Computer Adaptive Tests (CATs) items are dynamically selected for administration from an item bank based upon the respondent’s previous answers. Usually, there are 4-12 items with high measurement precision.
• Checklist fixed set of items used descriptively; scoring is not based on item response theory (IRT).

Linkages

• ASCQ-Me measures can be used in conjunction with NIH Toolbox or PROMIS measures that assess other aspects of health and function.

Related publications

• Sickle Cell Disease and Pain: Is it all Vaso-occlusive Crises?
• Pain-measurement tools in sickle cell disease: where are we now?
• Rigorous and practical quality indicators in sickle cell disease care
• What is the future of patient-reported outcomes in sickle-cell disease?
• Health-related quality of life and neuropathic pain in sickle cell disease in Jamaica
• Stigma and quality of life in adults with sickle cell disease in Jamaica and the United States
• Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective
• Assessment of health-related quality of life among adults hospitalized with sickle cell disease vaso-occlusive crisis
• Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks
• Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: comparison of PROMIS® to ASCQ-Me℠
• Quality of care in sickle cell disease: Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care
• The relationship between frequency and severity of vaso-occlusive crises and health-related quality of life and work productivity in adults with sickle cell disease
• Patient-reported outcomes in sickle cell disease and association with clinical and psychosocial factors: Report from the sickle cell disease implementation consortium
• A pilot test of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Jenerette Self-Care Assessment (J-SAT) Tools in adults with sickle cell disease
• Responsiveness of Patient-Reported Outcome Measurement Information System (PROMIS) pain domains and disease-specific patient-reported outcome measures in children and adults with sickle cell disease

Data access

More information about ASCQ-Me can be found at https://www.healthmeasures.net/explore-measurement-systems/ascq-me

To access ASCQ-Me data, visit https://www.healthmeasures.net/explore-measurement-systems/ascq-me/obtain-and-administer-measures