Trusted Resources: Evidence & Education
Scientific literature and patient education texts
Health Care Disparities Among Adolescents and Adults With Sickle Cell Disease: A Community-Based Needs Assessment to Inform Intervention Strategies
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
summary/abstract:Objective:
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.
Methods:
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.
Conclusion:
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.
DOI: 10.12788/jcom.0019
read more
Related Content
-
Conversation With Women in the Sickle Cell CommunitySickle Cell Project of NW Ohio at Neighb...
-
4th Annual Virtual Caregivers Summit – Sickle Cell Community Consortium4th Annual Virtual Sickle Cell Caregiver...
-
Tips for supporting students with sickle cell diseaseThe purpose of this booklet is to descri...
-
Individuals with Disabilities Education Act (IDEA)The U.S. Department of Education’s Ind...
-
Sickle cell patients in UK survey, especially those 16 to 20, voice problems with care and pain relief givenIn a survey, patients across the...
-
Living With Sickle Cell Disease Is a Constant Battle With Pain, According to one Woman Who Has It“You don’t look sick.” That’s ...
-
Sexual health after transplantNot everyone experiences these changes, ...
To improve your experience on this site, we use cookies. This includes cookies essential for the basic functioning of our website, cookies for analytics purposes, and cookies enabling us to personalize site content. By clicking on 'Accept' or any content on this site, you agree that cookies can be placed. You may adjust your browser's cookie settings to suit your preferences. More Information
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.
+myBinder