Community Health Workers as Support for Sickle Cell Care.
Community health workers are increasingly recognized as useful for improving health care and health outcomes for a variety of chronic conditions. Community health workers can provide social support, navigation of health systems and resources, and lay counseling. Social and cultural alignment of community health workers with the population they serve is an important aspect of community health worker intervention. Although community health worker interventions have been shown to improve patient-centered outcomes in underserved communities, these interventions have not been evaluated with sickle cell disease. Evidence from other disease areas suggests that community health worker intervention also would be effective for these patients. Sickle cell disease is complex, with a range of barriers to multifaceted care needs at the individual, family/friend, clinical organization, and community levels. Care delivery is complicated by disparities in health care: access, delivery, services, and cultural mismatches between providers and families. Current practices inadequately address or provide incomplete control of symptoms, especially pain, resulting in decreased quality of life and high medical expense. The authors propose that care and care outcomes for people with sickle cell disease could be improved through community health worker case management, social support, and health system navigation. This paper outlines implementation strategies in current use to test community health workers for sickle cell disease management in a variety of settings. National medical and advocacy efforts to develop the community health workforce for sickle cell disease management may enhance the progress and development of "best practices" for this area of community-based care.
Department of Pediatrics, University of Illinois, Chicago, Illinois.
Lewis L
LL
Hsu
Department of Pediatrics, Columbia University, New York, New York. Electronic address: nsg11@cumc.columbia.edu.
Nancy S
NS
Green
Health Resources and Services Administration, Rockville, Maryland.
E
E
Donnell Ivy
Department of Pediatrics, Columbia University, New York, New York.
Cindy E
CE
Neunert
Department of Pediatrics, Columbia University, New York, New York.
Arlene
A
Smaldone
Department of Medicine, Virginia Commonwealth University, Richmond, Virginia.
Shirley
S
Johnson
Department of Pediatrics, University of Illinois, Chicago, Illinois.
Sheila
S
Castillo
Department of Pediatrics, University of Illinois, Chicago, Illinois.
Amparo
A
Castillo
Sickle Cell Disease Foundation of Tennessee, Memphis, Tennessee.
Trevor
T
Thompson
Indiana Hemophilia and Thrombosis Center, Indianapolis, Indiana.
Kisha
K
Hampton
Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland.
John J
JJ
Strouse
Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, Maryland.
Rosalyn
R
Stewart
Sickle Cell Disease Association of Illinois, Chicago, Illinois.
TaLana
T
Hughes
Sickle Cell Disease Association of America, Baltimore, Maryland.
Sonja
S
Banks
Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Kim
K
Smith-Whitley
Department of Pediatrics, Washington University, St. Louis, Missouri.
Allison
A
King
Sickle Cell Disease Foundation of California, Los Angeles, California.
Mary
M
Brown
Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania.
Kwaku
K
Ohene-Frempong
Department of Medicine, Virginia Commonwealth University, Richmond, Virginia.
Wally R
WR
Smith
Department of Pediatrics, University of Illinois, Chicago, Illinois.
Molly
M
Martin
D000755:Anemia, Sickle Cell; D002908:Chronic Disease; D003150:Community Health Workers / Q000523:psychology*; D003695:Delivery of Health Care / Q000458:organization & administration; D019468:Disease Management; D006801:Humans; D011788:Quality of Life / Q000523:psychology