Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)
Chapter: Appendix G: Emory Adult Cystic Fibrosis Program
Appendix G
Emory Adult Cystic Fibrosis Program1
ABOUT
The Emory+Children’s Cystic Fibrosis (CF) Center is the second largest CF Center in the country in terms of patient base according to data from the CF Foundation. The Center includes both pediatric and adult CF programs. The adult clinic has two pulmonary function laboratories and a CF clinical trials office. The Center is in a 14,000 square foot building at Executive Park in Atlanta, Georgia. There are five half-day clinics each week scheduled for Monday, Tuesday, Thursday, and Friday. A comprehensive clinic preview is also held each week on Wednesdays. All adult CF team members are required to attend this preview.
PURPOSE
With having such a large facility, the Center has established a certain protocol to enhance its work. The purpose of the protocol is to ensure the provision of optimal care for CF patients and standardization of care among the different care providers. The protocol includes information specific to responsibilities for the multidisciplinary professionals.
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1 See http://medicine.emory.edu/pulmonary-allergy-critical-care/research/adult-cystic-fibrosis.html (accessed December 17, 2019).
STAFFING
Staffing includes two full-time CF nurses; two full-time CF respiratory therapists; one CF nurse practitioner; one CF social worker; one CF mental health counselor; one CF transition coordinator; one CF nutritionist; CF physicians with specific expertise in pulmonary, gastrointestinal, and endocrine medicine; clinical research coordinators; and administrative staff.
PROGRAM ORGANIZATION
The program includes pre-clinic preparation and clinic preview. Preclinic preparation calls for the nutritionist to review the patient panel for any annual labs that have yet to be taken and place orders for labs by Tuesday evening of the week before the patient’s visit. The registry manager will then compile a list of “short sheets,” which detail the patients who are scheduled for the week. If the registry manager is unavailable, these tasks will be completed by the CF director or coordinator. All other care staff will review the patient panels and take the necessary steps specific to their role for clinic preview.
During clinic preview, task folders are distributed to the different care providers (e.g., mental health worker, nurse practitioner). Each care provider will provide a summary of the patient as it relates to their discipline and note whether they need to see the patient. If necessary, the care providers will describe a “clinic goal” for the patient. Task summaries are noted from respiratory therapists, nutritionists, social workers, mental health coordinators, research coordinators, medical doctors, and registered nurses. After clinic preview, the summaries from each care provider are provided to the registry manager. The registry manager will then post the summary from each provider on the day of a patient’s clinical visit.
DATA COLLECTION AND USE
The program collects health information from approximately 700 patients with CF. The information is used to inform clinical care and research.
