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Patient Reported Outcomes In Sickle Cell Disease Examined Within A Conceptual Model, Swapandeep Mushiana, Marsha Treadwell Phd, Sherif M. Badawy Md, Ms, Liliana Preiss Phd, Allison King Md Mph Phd, Barbara Kroner Phd, Yumie Chen Bs, Jeffrey Glassberg, Victor Gordeuk Md, Nirmish Shah Md, Angie Snyder Phd Mph, Theodore Wun Md

Doctoral Dissertations

Objective: To examine the relations between patient reported outcomes (PROs) within a conceptual model for adults with sickle cell disease (SCD) ages 18 – 45 years enrolled in the Sickle Cell Disease Implementation Consortium (SCDIC) registry. We hypothesized that patient and SCD related factors and barriers to care would independently contribute to functioning as measured using the PRO domains. Additionally, pain and other SCD related complications are expected to impact the relation between the variables. Methods: Participants completed a 48-item survey that included socio-demographics and PRO measures, such as social functioning, pain impact emotional distress, and cognitive functioning. …