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
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
A preliminary investigation of the psychometric properties of PROMIS® scales in emerging adults with sickle cell disease.
Abstract OBJECTIVE: To report preliminary psychometric properties of PROMIS® assessments among emerging adults with sickle cell disease (SCD). METHOD: Forty-five emerging adults with SCD ages 18-24 (M = 20.81, SD...Full Article
Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness.
Abstract Background Families play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition. Our...Full Article
Health-Related Quality of Life (HRQL) Among Hospitalized Adults with Sickle Cell Disease (SCD): Incorporating Patient-Reported Outcome (PRO) Measures in Clinical Care.
Abstract Background: SCD is a chronic disease characterized by painful vaso-occlusive (VOC) episodes and hemolysis which lead to poor HRQL and premature mortality. As curative treatment with hematopoietic stem cell...Full Article
Responsiveness of PROMIS® Pediatric Measures to Hospitalizations for Sickle Pain and Subsequent Recovery.
Background The Patient‐Reported Outcomes Measurement Information System® (PROMIS®) created pediatric self‐report scales measuring a variety of health attributes (domains), but their responsiveness to changes in health status has not yet been...Full Article