National Academies Press: OpenBook

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)

Chapter: Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study

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Suggested Citation:"Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Appendix F

Georgia Comprehensive Sickle Cell Center: A Case Study
1

July 9, 2019, National Academies SCD Committee Site Visit

ABOUT

The Georgia Comprehensive Sickle Cell Center located at Grady Memorial Hospital in Atlanta, Georgia, was established in 1984. The purpose of the center is to provide the most basic education, clinical research, laboratory diagnosis, counseling, and patient care for sickle cell patients. It was the first comprehensive care clinic in the world to be open 24 hours per day for individuals with sickle cell disease (SCD). To this day, it is still the only comprehensive SCD care center in the state of Georgia.

ORGANIZATION

The Georgia Comprehensive Sickle Cell Center has an outpatient clinic 4 days per week. In addition, it has a 24 hours per day, 7 days per week emergency room with 11 beds specifically for those with SCD. The Center has more than 4,000 visits per year for acute care. Acute care has an admission rate of 16 percent and sends home approximately 84 percent of the individuals seen. The Center is run in collaboration with the Emory University School of Medicine and Grady Memorial Hospital.

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1 See https://www.gradyhealth.org/care-treatment/sickle-cell-diseasecenter (accessed December 17, 2019).

Suggested Citation:"Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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FUNDING

The Center is supported by an annual $500,000 grant from the Georgia Department of Public Health.

STAFFING

The Center is staffed by four physicians who provide health care services. Two physicians are full-time and on site while the other two physicians are part-time. The Center also staffs six advanced practice providers, which include nurse practitioners and physician assistants.

PROGRAMS (SERVICES) OFFERED

Services offered include

  • acute pain care,
  • blood transfusion,
  • access to hydrea clinics,
  • hydroxyurea treatments, and
  • wound care.

DATA COLLECTION AND USE

The Center collects data through the Sickle Cell Data Collection program in Georgia. Data are used to monitor and report the overall health of people in the state with SCD. Orthopedic clinicians at the Georgia Comprehensive Sickle Cell Center are currently involved in research to identify more efficient and effective ways to care for those with SCD.

PATIENT ENGAGEMENT

Patients are engaged through

  • sickle cell education,
  • monthly group support meetings, and
  • pediatric transition classes.
Suggested Citation:"Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 449
Suggested Citation:"Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
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Page 450
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Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed.

Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

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