Patient Reported Outcomes in Sickle Cell Disease Examined Within a Conceptual Model

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. Participants reported on lifetime SCD complications, pain episode frequency, timing and severity, and barriers to medical care. Healthcare utilization was obtained from medical records abstractions. Results: Higher pain frequency and severity and history of treatment for depression were associated with higher odds of worse outcomes in almost all PRO domains, controlling for age and gender for the 2,054 participants. Such social determinants of health as lower household income and unemployment, particularly due to disability status, were associated with higher odds of worse outcomes. Reports of fewer individual barriers to care were associated with better outcomes in emotion, social, cognitive and fatigue domains, while reports of fewer self-reported SCD complications/treatments were associated with better outcomes in emotion and sleep impact domains. Conclusions: Study results highlight the importance of the biopsychosocial model to enhance understanding of the needs of this complex population, and to design multi-dimensional approaches for providing more effective interventions to improve outcomes. @font-face {font-family: Cambria Math ; panose-1:2 4 5 3 5 4 6 3 2 4; mso-font-charset:0; mso-generic-font-family:roman; mso-font-pitch:variable; mso-font-signature:-536870145 1107305727 0 0 415 0;}@font-face {font-family:Times; panose-1:2 0 5 0 0 0 0 0 0 0; mso-font-charset:0; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:-536870145 1342185562 0 0 415 0;}p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-unhide:no; mso-style-qformat:yes; mso-style-parent: ; margin:0in; mso-pagination:widow-orphan; font-size:12.0pt; font-family: Times New Roman ,serif; mso-fareast-font-family: Times New Roman ;}.MsoChpDefault {mso-style-type:export-only; mso-default-props:yes; font-family: Calibri ,sans-serif; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:Calibri; mso-fareast-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin; mso-bidi-font-family: Times New Roman ; mso-bidi-theme-font:minor-bidi;}div.WordSection1 {page:WordSection1;