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Even patients with specialized conditions such as sickle cell disease need primary care physicians.
Fam Pract Manag. 2013 Jan-Feb;20(1):6-7.
With the advent of the Sickle Cell Centers of Excellence in the 1970s, patients diagnosed with sickle cell disease began receiving specialized, targeted care that has increased their average life expectancy from 14 years in 1973 to at least the mid-50s in recent years.1–3 This increased life span presents two challenges. First, fewer physicians are specializing in hematology, creating a shortage of doctors to care for the growing number of patients with sickle cell disease. Second, as these patients age, they not only suffer from the chronic organ damage that sickle cell disease causes but also are at risk of developing other, more common chronic diseases, such as hypertension, heart disease, stroke, renal disease, and cancer.
As many of these patients receive their care only from specialized centers, they aren't consistently receiving age-appropriate, routine preventive care and screenings for their chronic diseases. This work is best done by primary care physicians4; however, in many communities surrounding sickle cell centers, primary care physicians may have little interaction with patients with sickle cell disease.
The patient-centered medical home (PCMH) model incorporates the concept of caring for patients' basic needs while coordinating the care of their specialized diseases among other providers.5–7 Family medicine physicians serve as the ideal medical home for patients with sickle cell disease because they follow patients throughout a lifetime, providing continuity as these patients transition from the care of pediatric to adult hematologists. Although there are not currently a lot of resources to show that patients with sickle cell disease do better when followed by primary care physicians, the PCMH model has proven beneficial in improving preventive care.8 In theory, by integrating patients with sickle cell disease back into primary care, we can ensure they receive the preventive services and screenings they need as well as coordination of care with specialists as issues arise.
This integration will require more education on the part of the primary care physician. More medications and treatment modalities have been engineered for the treatment of sickle cell disease, and specific guidelines are available for improved outcomes. Hospitalizations focus on pain management, infection control, volume retention, and the prevention of tertiary outcomes. Collaboration with other specialties will likely be required for effective treatment and follow-up.
The Southeastern Exploratory Sickle Cell Center of Excellence is making concerted efforts with the specialties of hematology, family medicine, and emergency medicine to engage in research and curriculum development that hopes to aid in the sickle cell disease education of primary care physicians and first-line responders. Physicians and researchers from Georgia Health Sciences University, Morehouse School of Medicine, and the University of Florida are collaborating to assess what barriers both primary care and emergency medicine physicians face in seeing patients with sickle cell disease. They will also address concerns about disparities and socioeconomics of health care that may occur among this population.
The goal is for physicians to start to view sickle cell disease as an outpatient chronic illness that should be managed in the primary care setting with exacerbations that may be managed in the hospital. This will ultimately result in the integration of these patients back into primary care offices.
Dr. Herbert is the medical director of informatics for University Hospital in Augusta, Ga., and holds an appointment as clinical assistant professor with Georgia Health Sciences University. She was previously a family medicine educator with the Southeastern Exploratory Sickle Cell Center of Excellence, funded by the National Institute for Minority Health and Health Disparities/National Institutes of Health. Dr. Herbert wishes to acknowledge Dr. Abdulla Kutlar for his mentorship in the area of sickle cell disease. Author disclosure: no relevant financial affiliations disclosed.
The opinions expressed here do not necessarily represent those of Family Practice Management or our publisher, the American Academy of Family Physicians. We encourage you to share your views. Send comments to email@example.com, or add your comments below.
1. Platt OS, Brambilla DJ, Rosse WF, et al. Mortality in sickle cell disease. Life expectancy and risk factors for early death. N Engl J Med. 1994;330:1639–1644.
2. Girot R, Stankovic K, Lionnet F. New issues in adult sickle sell disease. Bull Acad Natl Med. 2008;192:1395–1409.
3. Diggs LM. Anatomic lesions in sickle cell disease. In: Abramson HA, Bertles JF, Wethers DL, ed. Sickle Cell Disease: Diagnosis, Management, Education, and Research. St. Louis: Mosby; 1973:189–229.
4. Pack-Mabien A, Haynes J Jr. A primary care provider's guide to preventive and acute care management of adults and children with sickle cell disease. J Am Acad Nurse Pract. 2009;21:250–257.
5. Joint principles of the patient-centered medical home. Patient-Centered Primary Care Collaborative website. http://www.pcpcc.net/node/14. Accessed Dec. 5, 2012.
6. Kellerman R, Kirk L. Principles of the patient-centered medical home. Am Fam Physician. 2007;76:774–775.
7. Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics. 2009;123:407–412.
8. Jackson GL, Powers BJ, Chatterjee R, et al. The patient-centered medical home: a systematic review [published ahead of print Nov. 27, 2012]. Ann Intern Med. http://annals.org/article.aspx?articleid=1402441. Accessed Dec. 6, 2012.
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