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Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice
Friday, October 12 • 3:15pm - 3:30pm
Patient and Caregiver Perspectives on Areas of Burden In Sickle Cell Disease Management

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Abstract

Authors:
Dr. Tilicia Mayo-Gamble- Georgia Southern University, Dr. Velma McBride Murry- Vanderbilt University, Ms. Alexis Gorden- Sickle Cell Foundation of Tennessee, Ms. Delores Quasie-Woode- Georgia Southern University

Objective: Sickle cell disease (SCD) has a substantial impact on both the health of individuals affected and healthcare utilization in the United States. Successful disease self-management is shown to positively affect health outcomes and decreases overall healthcare utilization. Yet, many SCD patients and caregivers are faced with external barriers that limit their ability to self-manage their disease. As part of a patient-centered outcomes research study, we partnered with the Sickle Cell Foundation of Tennessee to determine areas of greatest need in disease management among individuals with SCD and caregivers residing urban and rural communities.  
   
Methods: Individuals with SCD and their caregivers (N=43) completed open-ended questionnaires on barriers and challenges to SCD management. Participants were asked questions on: (1) issues of concern regarding sickle cell health care management; (2) conditions which place the greatest burden when trying to effectively manage care; (3) possible solutions to lessen these burdens; and (4) thoughts about ways of providing health care to increase optimal health functioning for patients with SCD. Content analysis was conducted on responses to identify important emerging themes. Responses were analyzed collectively noting differences in urban and rural groups.  
   
Results: Six themes emerged illustrating areas of burden in SCD management for patients and caregivers residing in urban and rural communities: (1) pain management; (2) communicating with healthcare providers; (3) stigma as a drug-seeker; (4) limited SCD knowledge among providers outside of hematology; (5) absence of treatment protocols; and (6) a need for enhanced disease management resources for both patients and caregivers. Two additional themes were central to patients and caregivers residing in rural communities: (1) the need for satellite clinics; and (2) distance to a hematologist.  
   
Conclusions: Findings revealed patient-centered priorities that need to be addressed to facilitate successful management of SCD. Patients and caregivers living in rural communities have similar concerns as those living in urban areas; yet, their distance from a sickle cell clinic and/or hematologist creates additional barriers to care. Areas of burden identified will be useful for increasing self-management resources that are tailored according to patient-centered preferences, as well as developing provider interventions to enhance care for patients living in urban and underserved rural communities.


Speakers
avatar for Tilicia Mayo-Gamble, PhD, MPH, MA, CHES

Tilicia Mayo-Gamble, PhD, MPH, MA, CHES

Assistant Professor, Department of Community Health Behavior and Education
Dr. Mayo-Gamble is an Assistant Professor in Jiann-Ping Hsu College of Public Health, Department of Community Health Education and Behavior at Georgia Southern University. She conducts research on community engaged approaches to increasing access to care and facilitating self-management... Read More →


Friday October 12, 2018 3:15pm - 3:30pm
Baltimore/ Annapolis

Attendees (30)