Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me): Conceptual Model Based on Review of the Literature and Formative Research.
Abstract Objectives Research-derived evidence about the impact of sickle cell disease (SCD) on the lives of affected adults is lacking. We conducted formative research to provide the basis for a...Full Article
Rigorous and Practical Quality Indicators in Sickle Cell Disease Care.
Abstract In recent years, several sickle cell-specific quality indicators have been developed using rigorous approaches. A review of the history and current status of the development of sickle cell-specific indicators...Full Article
Proceedings of a Sickle Cell Disease Ontology Workshop—Towards the First Comprehensive Ontology for Sickle Cell Disease.
Abstract Sickle cell disease (SCD) is a debilitating single gene disorder caused by a single point mutation that results in physical deformation (i.e. sickling) of erythrocytes at reduced oxygen tensions....Full Article
Patient Reports of Health Outcome for Adults Living with Sickle Cell Disease: Development and Testing of the ASCQ-Me℠ Item Banks.
Abstract Background Providers and patients have called for improved understanding of the health care requirements of adults with sickle cell disease (SCD) and have identified the need for a systematic,...Full Article
Sensitivity of Alternative Measures of Functioning and Wellbeing for Adults with Sickle Cell Disease: Comparison of PROMIS® to ASCQ-Me℠.
Abstract BACKGROUND: Sickle Cell Disease (SCD) causes profound suffering and decrements in daily functioning. Demand is growing for valid and reliable measures to systematically document these effects, particularly in adults....Full Article
Quality of Care in Sickle Cell Disease: Cross-Sectional Study and Development of a Measure for Adults Reporting on Ambulatory and Emergency Department Care.
Abstract Documented deficiencies in adult sickle cell disease (SCD) care include poor access to knowledgeable providers and inadequate treatment in emergency departments (EDs).The aim of this study was to create...Full Article