From the Colorado Sickle Cell Network, University of Colorado School of Medicine, Aurora, CO.
This article is the fifth in our Hemoglobinopathy Learning Collaborative series. See the related editorial by Oyeku et al in the February 2014 issue of JCOM. (—Ed.)
Abstract
- Objective: To describe the development and implementation of a patient navigation program to help individuals with sickle cell disease (SCD) overcome barriers to finding adult primary care.
- Methods: Six patient navigators were recruited and received training. A workgroup was formed to clarify goals and objectives and develop standard procedures. Navigators were instrumental in establishing a network of primary care offices that were willing to accept new patients with SCD. Navigators assisted patients in making calls to primary care offices and in some cases would attend appointments with them.
- Results: About two-thirds of patients who were referred to the navigator program for primary care follow-up attended an initial appointment with a new primary care provider.
- Conclusion: Patient navigation is a feasible and useful strategy to help individuals with SCD overcome barriers to receiving comprehensive care.
With advances in the management of sickle cell disease (SCD), adults with SCD are living longer [1,2]. Adequate care for individuals with SCD requires that they receive both specialized services and comprehensive primary care. A lack of comprehensive outpatient care can translate into suboptimal outcomes and increased reliance on the emergency room [3].
In the metropolitan area of Denver, specialty care for individuals with SCD is centralized and easily accessible at a tertiary academic medical center. However, we found that many adult patients treated in our specialty setting had not established care with an adult primary care provider (PCP) or had not been seen regularly by their PCP for ongoing preventive primary care services. Thus, they were not getting their comprehensive care needs met. Although support was available from community-based organizations to help them access certain resources (eg, directions to the food bank), patients reported difficulties in accessing the adult care health system, for example, securing appointments with PCPs and securing/maintaining insurance. No services existed to specifically help them navigate through the complexities of obtaining needed care.
Patient navigation is a strategy commonly used in cancer care settings [4–7] to to help patients overcome barriers in accessing the health care system. Patient navigators can not only facilitate improved health care access and quality for underserved populations through advocacy and care coordination, but they can also address the information needs of patients and assist in overcoming language and cultural barriers. Navigation has been proposed as a strategy to help reduce health disparities [8].
We developed a patient navigation program to address unmet needs of children and adults with SCD receving care in our clinics. In this paper we describe our program.
Patient Navigator Program
Setting
The SCD Treatment Demonstration Program was created in 2004 by the federal government to improve care and outcomes for persons with SCD [9]. As a grantee of this program, we developed the Colorado Sickle Cell Care Network (CSCCN) to care for scd patients in the Denver metropolitan and surrounding area. The CSCCN is a collaboration between the Colorado Sickle Cell Treatment and Research Center and the Division of General Internal Medicine and Department of Hematology at the University of Colorado Denver Anschutz Medical Campus, the Center for Cancer and Blood Disorders at Children’s Hospital Colorado, and 2 community-based organizations. With other grantees, we are participating in the Hemoglobinopathy Learning Collaborative, a collaborative of teams utilizing iterative cycles of testing to learn what changes can be made to improve care processes [10].