Patients with sickle cell disease (SCD) often face inadequate care, which can lead to unnecessary hospital visits and preventable complications. Barriers to care for patients with SCD span individual, interpersonal, provider, and socio-environmental levels.
Sickle cell disease (SCD) is a severe, inherited disorder that disproportionately affects African Americans in the United States. Despite available treatments, patients with SCD are often hospitalized due to preventable complications and a lack of optimal care from an SCD specialist. One analysis assessed the impacts of different barriers to care on individual, interpersonal, provider, and socio-environmental levels.
A program carried out by the Sickle Cell Disease Implementation Consortium (SCDIC) implemented surveys, focus groups, and interviews with patients with SCD. Researchers analyzed data from surveys and interviews at three specific SCDIC sites, two in the Southeast and one in the West. These sites are academic health centers with outpatient centers that include specialized care for patients with SCD. Patients reported barriers to care through interviews or a checklist survey.
Results revealed that patient-reported barriers included lack of insurance, reliable transportation, and family support. Around 43% of patients expressed that long wait times at clinics are a barrier to care. Patients also described a lack of coordination between providers and being unable to find a knowledgeable provider with SCD expertise. Over half (56%) of the participants reported provider knowledge and attitudes as a barrier to care. Specifically, patients reported a lack of communication, trust, and satisfaction with their providers. In some cases, patients reported having insufficient knowledge about the care they needed or how to manage their condition.
The responses to the SCDIC surveys and interviews underscore the need for improved access to care for patients with SCD. Clinicians and healthcare providers could make an increased effort to educate and empower patients to properly care for their condition. However, other factors that play a role in acting as a barrier to care should also be addressed.
Source:
Phillips, S., Chen, Y., Masese, R., Noisette, L., Jordan, K., Jacobs, S., Hsu, L. L., Melvin, C. L., Treadwell, M., Shah, N., Tanabe, P., & 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
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