Original Article

Primary Care Providers’ Comfort Levels in Caring for Patients with Sickle Cell Disease

Authors: Lauren N. Whiteman, MPH, Carlton Haywood, MA, PhD, Sophie Lanzkron, MD, MHS, John J. Strouse, MD, PhD, Leonard Feldman, MD, Rosalyn W. Stewart, MD, MS

Abstract

Objective: The purpose of this study was to determine the comfort levels of primary care providers in caring for individuals with sickle cell disease (SCD) and determine factors that improved or lessened provider comfort.

Methods: We surveyed providers at the annual Johns Hopkins Community Physicians retreat. The survey consisted of 19 questions and measured comfort levels in four domains: providing ambulatory care to individuals with SCD, managing SCD comorbidities, managing SCD-specific issues, and managing chronic pain. We conducted bivariate analyses to identify any demographic or practice characteristics associated with comfort levels. Multivariable analyses were conducted to identify independent correlates of physician comfort.

Results: The majority of respondents lacked confidence with each of the four aspects of caring for individuals with SCD. Having treated patients with SCD and using knowledge from residency were both independently associated with increased confidence when providing ambulatory care and managing SCD-specific issues in multivariable analyses.

Conclusions: The delivery of high-quality care to adults with SCD in primary care may be limited because of a lack of provider comfort in providing that care. Because provider reliance on knowledge gained from residency significantly affected the management of patients with SCD, it is essential that continuing medical education on SCD is readily available to ensure that providers are using current information and knowledge. In addition, as comfort increases with the number of patients with SCD in a provider’s panel, it may be beneficial to identify a subset of primary care providers interested in SCD and refer patients to those providers.

This content is limited to qualifying members.

Existing members, please login first.

If you have an existing account please login now to access this article or view your purchase options.

Purchase only this article ($15)

Create a free account, then purchase this article to download or access it online for 24 hours.

Purchase an SMJ online subscription ($75)

Create a free account, then purchase a subscription to get complete access to all articles for a full year.

Purchase a membership plan (fees vary)

Premium members can access all articles plus recieve many more benefits. View all membership plans and benefit packages.

References

1. Hassell KL. Population estimates of sickle cell disease in the U.S. Am J Prev Med 2010;38(4 suppl):S512-S521.
 
2. National Health Lung and Blood Institute. Evidence-based management of sickle cell disease: expert panel report, 2014. http://www.nhlbi.nih.gov/health-pro/guidelines/sickle-cell-disease-guidelines. Accessed June 5, 2015.
 
3. Grosse SD, Schechter MS, Kulkarni R, et al. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics 2009;123:407-412.
 
4. Okumura MJ, Heisler M, Davis MM, et al. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med 2008;23:1621-1627.
 
5. O’Rorke JE, Chen I, Genao I, et al. Physicians’ comfort in caring for patients with chronic nonmalignant pain. Am J Med Sci 2007;333:93-100.
 
6. Strouse JJ, Heeney MM. Hydroxyurea for the treatment of sickle cell disease: efficacy, barriers, toxicity, and management in children. Pediatr Blood Cancer 2012;59:365-371.
 
7. Adams RJ, McKie VC, Hsu L, et al. Prevention of a first stroke by transfusions in children with sickle cell anemia and abnormal results on transcranial Doppler ultrasonography. N Engl J Med 1998;339:5-11.
 
8. Gomes LM, Vieira MM, Reis TC, et al. Knowledge of family health program practitioners in Brazil about sickle cell disease: a descriptive, cross-sectional study. BMC Fam Pract 2011;12:89.
 
9. Aljuburi G, Okoye O, Majeed A, et al. Views of patients about sickle cell disease management in primary care: a questionnaire-based pilot study. JRSM Short Rep 2012;3:78.
 
10. Aljuburi G, Phekoo KJ, Okoye NO, et al. Patients’ views on improving sickle cell disease management in primary care: focus group discussion. JRSM Short Rep 2012;3:84.
 
11. Sterling S, Kline-Simon AH, Wibbelsman C, et al. Screening for adolescent alcohol and drug use in pediatric health-care settings: predictors and implications for practice and policy. Addict Sci Clin Pract 2012;7:13.
 
12. Zumberg MS, Reddy S, Boyette RL, et al. Hydroxyurea therapy for sickle cell disease in community-based practices: a survey of Florida and North Carolina hematologists/oncologists. Am J Hematol 2005;79:107-113.
 
13. Lanzkron S, Haywood C Jr, Hassell KL, et al. Provider barriers to hydroxyurea use in adults with sickle cell disease: a survey of the Sickle Cell Disease Adult Provider Network. J Natl Med Assoc 2008;100:968-973.