Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Nov 17;11(11):e050880.
doi: 10.1136/bmjopen-2021-050880.

Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA

Matthew P Smeltzer  1 , Kristen E Howell  2 , Marsha Treadwell  3 , Liliana Preiss  4 , Allison A King  5 , Jeffrey A Glassberg  6 , Paula Tanabe  7 , Sherif M Badawy  8   9 , Lisa DiMartino  4 , Robert Gibson  10 , Julie Kanter  11 , Lisa M Klesges  12 , Jane S Hankins  13 ; Sickle Cell Disease Implementation Consortium
Affiliations

Identifying barriers to evidence-based care for sickle cell disease: results from the Sickle Cell Disease Implementation Consortium cross-sectional survey of healthcare providers in the USA

Matthew P Smeltzer et al. BMJ Open. .

Abstract

Objectives: Sickle cell disease (SCD) leads to chronic and acute complications that require specialised care to manage symptoms and optimise clinical results. The National Heart Lung and Blood Institute (NHLBI) evidence-based guidelines assist providers in caring for individuals with SCD, but adoption of these guidelines by providers has not been optimal. The objective of this study was to identify barriers to treating individuals with SCD.

Methods: The SCD Implementation Consortium aimed to investigate the perception and level of comfort of providers regarding evidence-based care by surveying providers in the regions of six clinical centres across the USA, focusing on non-emergency care from the providers' perspective.

Results: Respondents included 105 providers delivering clinical care for individuals with SCD. Areas of practice were most frequently paediatrics (24%) or haematology/SCD specialist (24%). The majority (77%) reported that they were comfortable managing acute pain episodes while 63% expressed comfort with managing chronic pain. Haematologists and SCD specialists showed higher comfort levels prescribing opioids (100% vs 67%, p=0.004) and managing care with hydroxyurea (90% vs 51%, p=0.005) compared with non-haematology providers. Approximately 33% of providers were unaware of the 2014 NHLBI guidelines. Nearly 63% of providers felt patients' medical needs were addressed while only 22% felt their mental health needs were met.

Conclusions: A substantial number of providers did not know about NHLBI's SCD care guidelines. Barriers to providing care for patients with SCD were influenced by providers' specialty, training and practice setting. Increasing provider knowledge could improve hydroxyurea utilisation, pain management and mental health support.

Keywords: haematology; mental health; paediatrics.

PubMed Disclaimer

Conflict of interest statement

Competing interests: JSH receives research funding support from Global Blood Therapeutics and is received consultancy fees from Bluebird Bio, Forma Therapeutics, and Global Blood Therapeutics; JG receives research funding support from Pfizer; AK owns stock in Magenta Therapeutics.

Figures

Figure 1
Figure 1
Barriers to prescribing opioids: the extent of providers caring for persons with SCD who report each reason as a moderate or complete barrier to opioid prescription for chronic pain. SCD, sickle cell disease.
Figure 2
Figure 2
Barriers to prescribing hydroxyurea: the importance of barriers providers face to prescribing hydroxyurea in sickle cell disease
See this image and copyright information in PMC

References

    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;330:1639–44. 10.1056/NEJM199406093302303 - DOI - PubMed
    1. Kato GJ, Piel FB, Reid CD, et al. . Sickle cell disease. Nat Rev Dis Primers 2018;4:18010. 10.1038/nrdp.2018.10 - DOI - PubMed
    1. Lanzkron S, Little J, Field J, et al. . Increased acute care utilization in a prospective cohort of adults with sickle cell disease. Blood Adv 2018;2:2412–7. 10.1182/bloodadvances.2018018382 - DOI - PMC - PubMed
    1. Panepinto JA, Pajewski NM, Foerster LM, et al. . Impact of family income and sickle cell disease on the health-related quality of life of children. Qual Life Res 2009;18:5. 10.1007/s11136-008-9412-8 - DOI - PMC - PubMed
    1. Kumar V, Chaudhary N, Achebe MM. Epidemiology and predictors of all-cause 30-day readmission in patients with sickle cell crisis. Sci Rep 2020;10:2082. 10.1038/s41598-020-58934-3 - DOI - PMC - PubMed

Publication types