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Barriers to sickle cell disease care are identified across multiple levels including individual, family, provider, and socio-environmental levels according to patient perspectives.
In recent years, various barriers to care among patients with sickle cell disease (SCD) have been acknowledged as part of an ongoing systemic issue in healthcare. In the conclusion of a new study examining this, a team of investigators stated that strategies tailored toward reducing these barriers are warranted.
Shannon Phillips, RN, PhD, College of Nursing, Medical University of South Carolina, led investigators in assessing the perspectives of individuals with sickle cell disease on barriers to care. These findings can inform and improve interventions for this population specifically by linking unaffiliated individuals with proper sickle cell disease care.
Individuals with the disease experience a plethora of painful and detrimental symptoms as a result of the alterations in the shape of red blood cells with subsequent blood vessel occlusion, infarction, organ damage, and inflammation. Optimal care for sickle cell disease requires a multidisciplinary approach, according to investigators.
Unfortunately, the majority of those with the disease receive suboptimal care, or are unaffiliated and haven’t seen a specialist, even though these complications lead to high rates of acute care utilization and hospitalization.
This study assessed barriers to care from the perspective of the patients in a multi-state sample, with a total of 8 themes and 10 sub-themes identified across the ecological levels of barriers. Participants from 3 comprehensive sickle cell disease centers completed surveys and interviews that explored the themes around obstacles of care from March-June 2018.
Surveys were administered to 208 adolescent individuals with SCD. The survey population consisted of individuals aged 19-30 years, 58.2% female, 95% Black or African American, and 90.4% non-Hispanic or Latino. There were 44 in-depth interviews conducted among individuals who had a mean age of 31.1 years, with 97.8% being African American or Black, non-Hispanic or Latino, and 54.5% being female.
Barriers to care were identified and classified according to ecological level. This included individual-level, family/interpersonal level, provider level, and socio-environmental/organizational level barriers to care.
On the family/interpersonal level, inadequate caregiver support and competing life demands were the inhibiting factors to care, while lack of knowledge in self-management and disease severity interfered with care on the individual-level.
An array of impediments were revealed on the provider-level–limited provider knowledge, provider inexperience, poor provider-patient relationship, being treated differently, and the provider’s lack of appreciation of the patient’s own knowledge of their disease.
The socio-environmental/organizational level also consisted of a compilation of hindrances including 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 care for sickle cell disease.
The most prevalent barriers were identified on the socio-environmental and organizational levels with transportation difficulties being a significant challenge. This was especially apparent in communities that lacked a sickle cell specialist.
“The aims of the current study are consistent with recommendations to address barriers using a multi-factorial approach,” investigators wrote. “Further, results add a translational perspective to previous studies exploring the impact of stigma and racial discordance on the care of patients with SCD.”
The study, “Perspectives of individuals with sickle cell disease on barriers to care” was published in PLOS One.