Food Insecurity, Quality of Life, Healthcare Utilization, and Clinical Disease Outcomes in AYA Patients with Sickle Cell Disease

Sickle cell disease (SCD) is a chronic, debilitating condition that negatively impacts patient quality of life (QOL). In addition to causing frequent crises that lead patients to seek medical attention, it can also exacerbate socioeconomic inequities patients with SCD often already face. A specific subset of patients, adolescents and young adults (AYA), defined by the NCI as individuals ages 15-39, are particularly at risk, which can lead to worse outcomes and increased healthcare utilization (HCU). However, analyses on social determinants of health, QOL, HCU, and clinical disease outcomes (CDO) in SCD are limited, particularly among the AYA population. Our group seeks to investigate the impact of social determinants of health on patients with SCD. We have previously reported on food insecurity (FI), QOL, and HCU in children with SCD. This project aims to specifically study the interplay of these metrics further, while also incorporating CDO. Furthermore, we seek to understand these relationships in AYA patients and how they may be uniquely related in this population. We hypothesize that FI is associated with decreased QOL, increased HCU, and worse CDO. We also hypothesize that the magnitude of this association is greater in AYA patients.

We designed an observational study where patients with SCD ages 0- 24 years were recruited during routine SCD visits from June 2015- June 2019. We designed a baseline survey to measure FI and QOL using validated instruments, including the USDA Food Security Short Form and the PedsQL _TM Sickle Cell Disease module. All patients were also consented to participate in our clinical registry, allowing for abstraction of HCU and CDO. Surveys were scored and transformed via established methods: USDA FS (range 0-6; >1 indicating some level of FI), and PedsQL _TM (range 0-100; ≤60 indicating low QOL). Chart review captured number of ER visits, admissions, annual rate of vaso-occlusive crises (VOC) and acute chest syndrome (ACS). Other CDOs were also captured and these included presence of neurocognitive/psychiatric conditions (i.e., silent stroke, DSM diagnosis), ischemic events like avascular necrosis, and surgeries like cholecystectomies. Linear regressions, Chi squared analyses, Wilcoxon rank-sum tests, and Fisher's exact tests were performed to check for differences within and amongst these variables based on AYA status.

Of surveyed patients (n=115), 56% were female, 39% were AYA, and 75% had SS disease. Some level of food insecurity (FS score > 1) was present in 34% of our population (compared to 10.5% of households nationally per the USDA) with no difference observed between AYA and non-AYA patients (Coleman 7). Average QOL score was 74, but this differed significantly between AYA and non-AYA patients. Specifically, total QOL scores for AYA patient were 10 points lower (p=0.003) and AYA patients were three times as likely to have QOL scores < 60 (p=0.005). Additionally, as previously reported, all patients in the cohort with FI had lower QOL (p=0.008). FI was also tested against HCU. While no difference was observed in number of ER visits, median admissions were twice as high for those with FI (p=0.07). This relationship was not affected by AYA status, but AYA patients did have 1.5 times as many ER visits and admissions combined (p=0.03). Food insecurity was associated with certain CDO measures such as VOC rates, which were four times higher in FI patients (p=0.03), and ACS rates (p=0.03). VOC/ACS rates did not differ between AYA and non-AYA patients and AYA status did not affect the relationship between FI and these CDO. However, AYA patients did demonstrate higher rates of neurocognitive/psychiatric conditions (p=0.009), cholecystectomies (p=0.03), and avascular necrosis (p=0.003).

This study indicates that FI among our SCD patients was highly prevalent, associated with worse QOL, and increased HCU. We also show that FI is associated with worse CDO, which is an impetus for future intervention. Although AYA status did not significantly affect the magnitude of these relationships, it was associated with worsened QOL, increased HCU, and worse CDO. We plan to further study these trends with additional variables associated with sickle cell CDO, the role of preventative care in these populations, and how other social determinants of health impact the care and outcomes of our patients.

Coleman, et al. Household Food Security in the United States in 2019, USDA, Economic Research Service.