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Perspectives of individuals with sickle cell disease on barriers to care.

Publication ,  Journal Article
Phillips, S; Chen, Y; Masese, R; Noisette, L; Jordan, K; Jacobs, S; Hsu, LL; Melvin, CL; Treadwell, M; Shah, N; Tanabe, P; Kanter, J
Published in: PLoS One
2022

INTRODUCTION: Sickle cell disease (SCD) is an inherited hemoglobinopathy that predominantly affects African Americans in the United States. The disease is associated with complications leading to high healthcare utilization rates, including emergency department (ED) visits and hospitalizations. Optimal SCD care requires a multidisciplinary approach involving SCD specialists to ensure preventive care, minimize complications and prevent unnecessary ED visits and hospitalizations. However, most individuals with SCD receive sub-optimal care or are unaffiliated with care (have not seen an SCD specialist). We aimed to identify barriers to care from the perspective of individuals with SCD in a multi-state sample. METHODS: We performed a multiple methods study consisting of surveys and interviews in three comprehensive SCD centers from March to June 2018. Interviews were transcribed and coded, exploring themes around barriers to care. Survey questions on the specific themes identified in the interviews were analyzed using summary statistics. RESULTS: We administered surveys to 208 individuals and conducted 44 in-depth interviews. Barriers to care were identified and classified according to ecological level (i.e., individual, family/interpersonal, provider, and socio-environmental/organizational level). Individual-level barriers included lack of knowledge in self-management and disease severity. Family/interpersonal level barriers were inadequate caregiver support and competing life demands. Provider level barriers were limited provider knowledge, provider inexperience, poor provider-patient relationship, being treated differently, and the provider's lack of appreciation of the patient's SCD knowledge. Socio-environmental/organizational level barriers included limited transportation, lack of insurance, administrative barriers, poor care coordination, and reduced access to care due to limited clinic availability, services provided or clinic refusal to provide SCD care. CONCLUSION: Participants reported several multilevel barriers to SCD care. Strategies tailored towards reducing these barriers are warranted. Our findings may also inform interventions aiming to locate and link unaffiliated individuals to care.

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Published In

PLoS One

DOI

EISSN

1932-6203

Publication Date

2022

Volume

17

Issue

3

Start / End Page

e0265342

Location

United States

Related Subject Headings

  • United States
  • Humans
  • Hospitalization
  • Health Services Accessibility
  • Health Services
  • General Science & Technology
  • Emergency Service, Hospital
  • Anemia, Sickle Cell
 

Citation

APA
Chicago
ICMJE
MLA
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Phillips, S., Chen, Y., Masese, R., Noisette, L., Jordan, K., Jacobs, S., … Kanter, J. (2022). Perspectives of individuals with sickle cell disease on barriers to care. PLoS One, 17(3), e0265342. https://doi.org/10.1371/journal.pone.0265342
Phillips, Shannon, Yumei Chen, Rita Masese, Laurence Noisette, Kasey Jordan, Sara Jacobs, Lewis L. Hsu, et al. “Perspectives of individuals with sickle cell disease on barriers to care.PLoS One 17, no. 3 (2022): e0265342. https://doi.org/10.1371/journal.pone.0265342.
Phillips S, Chen Y, Masese R, Noisette L, Jordan K, Jacobs S, et al. Perspectives of individuals with sickle cell disease on barriers to care. PLoS One. 2022;17(3):e0265342.
Phillips, Shannon, et al. “Perspectives of individuals with sickle cell disease on barriers to care.PLoS One, vol. 17, no. 3, 2022, p. e0265342. Pubmed, doi:10.1371/journal.pone.0265342.
Phillips S, Chen Y, Masese R, Noisette L, Jordan K, Jacobs S, Hsu LL, Melvin CL, Treadwell M, Shah N, Tanabe P, Kanter J. Perspectives of individuals with sickle cell disease on barriers to care. PLoS One. 2022;17(3):e0265342.

Published In

PLoS One

DOI

EISSN

1932-6203

Publication Date

2022

Volume

17

Issue

3

Start / End Page

e0265342

Location

United States

Related Subject Headings

  • United States
  • Humans
  • Hospitalization
  • Health Services Accessibility
  • Health Services
  • General Science & Technology
  • Emergency Service, Hospital
  • Anemia, Sickle Cell