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scientific articles

Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies

key information

source: Journal of Clinical Outcomes Management

year: 2020

authors: Marsha J. Treadwell, Eufemia Jacob, Danielle Hessler, Alex Francis Chen, Yumei Chen, Swapandeep Mushiana, Michael B. Potter, Elliott Vichinsky


Adolescents and adults with sickle cell disease (SCD) face pervasive disparities in health resources and outcomes. We explored barriers to and facilitators of care to identify opportunities to support implementation of evidence-based interventions aimed at improving care quality for patients with SCD.

We engaged a representative sample of adolescents and adults with SCD (n = 58), health care providers (n = 51), and community stakeholders (health care administrators and community-based organization leads (n = 5) in Northern California in a community-based needs assessment. We conducted group interviews separately with participant groups to obtain in-depth perspectives. Adolescents and adults with SCD completed validated measures of pain interference, quality of care, self-efficacy, and barriers to care. Providers and community stakeholders completed surveys about barriers to SCD care.

Strategies for improving access to compassionate, evidence-based quality care, as well as strategies for minimizing the burden of having SCD, are warranted for this medically complex population.

organization: University of California San Francisco, USA; University of California Los Angeles, USA; University of California Berkeley, USA

DOI: 10.12788/jcom.0019

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