Sickle cell disease (SCD) is associated with a significant amount of associated medical conditions that complicate the course of the disease. Traditional measures of the impact of this disease have focused on medical outcomes such as survival, hospitalizations, and occurrence of pain. However, patient reported outcomes such as health-related quality of life (HRQL) have become increasingly important measures of disease impact. HRQL is a complex patient-reported outcome that provides an assessment of how an illness, its complications, and its treatment are experienced by a patient. This study will utilize generic measures of HRQL as well as a disease specific tool called the PedsQL™ Sickle Cell Disease Module. This new questionnaire is ready for field testing. Headed by Julie Panepinto, MD, MSPH of the Medical College of Wisconsin and James Varni, PhD, the developer of the PedsQL™, the aim of this multi-institutional pilot study is to determine the pilot standard scores and psychometric properties for the newly developed PedsQL™ Sickle Cell Disease Module.
The Development of the PedsQL Sickle Cell Disease Module
Sandra Sherman-bien, PhDConducted at:
Miller Children's & Women's Hospital Long BeachCurrently enrolling additional patients: