ABSTRACT
Background: According to national prevalence data, SCD has an estimated economic burden of $2.98 billion per year in the United States and caring for a child with sickle cell disease (SCD) carries its own financial burden, resulting in higher healthcare costs and unintended days lost from employment. Social experiences are known to impact health outcomes in the general pediatric population. These experiences can be examined through the construct of social determinants of health (SDOH), the "condition in which people are born, grow, work, live and age" that impact their health. Since the WHO has designated COVID-19 a pandemic in January 2020, many families in the US have suffered financially, and during the shutdowns, there was a record number of jobs lost. The objective of this study was to determine the impact of the COVID-19 pandemic on financial and employment status of SCD Families Methods: This study was part of the larger CNH Sickle Cell Disease Social Determinants of Health study that was IRB approved. Caregivers of children with SCD completed a 30-question survey reporting their experiences with SDOH that included Demographics, USDA Food Security Scale, the We Care housing screening tool, and the validated COVID-19 Employment Status/COVID-19 related household finances survey in RedCap during clinic visits and hospitalizations Results: 99 caregivers of SCD patients responded to our survey (82.5% Female, 17.5% Male) (N=97). 93.9% identified as African-American, 3% identified as Hispanic or Latinx, 1% identified as "other". Of respondents, 66% were insured through on Medicaid and 33% had private insurance. Twenty-six percent endorsed food insecurity and 2724% relied on low-cost food. Thirty-one percent lived in an apartment, 67.768% lived in a home, 1% lived in shelter or transitional housing. Sixteen percent lived in subsidized or public housing. Thirty-seven (36.8%) percent reported at least once they were being unable to pay the mortgage or rent on time at least once, 9% (8.5%) reported living with other people because of financial difficulties, 55.2% reported their home not being heated, 7.2% reported being evicted from their home and 3.1% lived in an emergency shelter or transitional housing. 6.1% had an educational level of high school graduation or less, 42.2% were college graduates or completed additional post-graduate education (N=98). Two weeks prior to the pandemic, 61.5% worked full time, 13.5% worked part time, 6.3% were unemployed with only 2.1% working from home of the 96 caregivers who responded to this question. 15.5% (N=12 of 77) reported losing their job or were furloughed during the pandemic;34.4% (N=33 of 96) reporting at least one household member losing a job or a significant amount of income. Twenty-five percent (N=21 of 83) reported it was difficult to get work/school done because of the home environment. 36.4 % (N=35 of 96) reported household income was significantly less since February 2020. 53% (N=52 of 97) worried their household income has been or will be negatively impacted by the COVID-19 pandemic. Additionally, 48.9% (N=47 of 96) worried the value of their assets (housing, savings, other financial assets) has been or will be negatively impacted by COVID-19 and its effects. Since February 2020, 9.8% (N= 9 of 97) received unemployment insurance, 30.9% (N=29 of 94) received SNAP or food stamps, 16.5% (N= 15 of 91) received from the food pantry, 6.6% (N=6 of 90) applied for temp ass.