Abstract

Sickle cell disease (SCD) is one of the most common severe genetic hemoglobinopathies that has been recognized by the World Health Organization as a global public health problem. Socioeconomic status (SES) is defined as an individual's social or economic standing and is a measure of an individual's or family's economic position or rank in a social group. Current guidelines and management algorithms of SCD do not factor in the effect of SES on patients with SCD. There is a paucity of literature regarding the role of SES and its effect on clinical outcomes and characteristics of SCD. Studies have shown that lower SES is linked to disproportionate access to health care in many diseases and of all the factors that measure SES, income was the most indicative. We conducted an anonymous online survey of 1339 patients with sickle cell disease over two (2) years (2021-2023). The questionnaire inquired about how many years the patient had SCD, whether they were being seen by a hematologist, what the average household income was, what the highest level of education in the household was, number of hospitalizations in the past year, insurance status, payment plan discussions, appointments missed due to cost, and the main factor in the delay of treatment. Using data analysis software, results showed that patients with lower SES had statistically significant higher number of missed appointments and statistically significant higher number of hospitalizations when compared to patients with higher SES. Our literature review showed that patients and families of patients with SCD were of predominantly low SES corresponding to lower household incomes and lower educational levels when compared to healthy patients/families. In the setting of SCD, lower SES has been shown to result in increased prevalence of disease, greater occurrence of possible complications, increased number of in-hospital admissions, increased mortality, increased healthcare utilization costs, and decreased health-related quality of life (HRQoL) for patients and families. The impact of SES on patients with SCD is a national health problem and increased advocacy is needed for the implementation of SES in the management of SCD moving forward to achieve decreased healthcare utilization costs while increasing health-related quality of life and access to healthcare for patients and families.

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