Food insecurity, housing instability, and dietary quality among children with sickle cell disease: Assessment from a single urban center

2021 ◽  
Author(s):  
Cristina R. Fernández ◽  
Maureen Licursi ◽  
Randi Wolf ◽  
Margaret T. Lee ◽  
Nancy S. Green
Keyword(s):  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Sickle Cell ◽  
Dietary Quality ◽  
Disease Assessment ◽  
Housing Instability ◽  
Urban Center ◽  
Cell Disease

scholarly journals Mental Health Assessment of Youth with Sickle Cell Disease and Their Primary Caregivers During the COVID-19 Pandemic

2022 ◽  
Author(s):  
Nancy Green ◽  
Deepa Manwani ◽  
Kim Smith-Whitley ◽  
Banu Aygun ◽  
Abena Appiah-Kubi ◽  
...  
Keyword(s):  
Mental Health ◽  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Sickle Cell ◽  
Health Assessment ◽  
Cell Disease ◽  
Mental Health Symptoms ◽  
Health Symptoms ◽  
Mental Health Assessment ◽  
On Line

Youth with sickle cell disease (SCD) and their caregivers are susceptible to stress and depression, perhaps exacerbated by pandemic-associated health and economic concerns. Most of the 50 youth-caregiver dyads enrolled in the multi-site HABIT trial took an on-line survey of self-reported mental health symptoms and food insecurity during the 2020 COVID-19 pandemic. Compared to largely pre-pandemic results, prevalence of mental health symptoms in dyad members appeared to have shifted: fewer youth and more caregivers were affected during the pandemic; many of both groups lacked optimism. Pandemic screening of youth with SCD for mental health symptoms and food insecurity appears warranted.

scholarly journals Food insecurity and social support in families of children with sickle-cell disease

2019 ◽  
Vol 95 (3) ◽  
pp. 306-313 ◽  
Author(s):  
Isabel Nascimento dos Santos ◽  
Jorginete de Jesus Damião ◽  
Maria de Jesus Mendes da Fonseca ◽  
Cláudia dos Santos Cople-Rodrigues ◽  
Odaleia Barbosa de Aguiar
Keyword(s):  
Social Support ◽  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Sickle Cell ◽  
Cell Disease

scholarly journals Red blood cell alloimmunization in sickle cell disease: assessment of transfusion protocols during two time periods

Transfusion ◽  
2018 ◽  
Vol 58 (7) ◽  
pp. 1588-1596 ◽  
Author(s):  
Sally A. Campbell‐Lee ◽  
Kristina Gvozdjan ◽  
K. Mia Choi ◽  
Yi‐Fan Chen ◽  
Santosh L. Saraf ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Blood Cell ◽  
Sickle Cell ◽  
Red Blood Cell ◽  
Disease Assessment ◽  
Cell Disease ◽  
Time Periods

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

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 972-972
Author(s):  
Sharjeel Syed ◽  
Kristen Wroblewski ◽  
Radhika Peddinti ◽  
Gabrielle Lapping-Carr ◽  
Wendy S Darlington
Keyword(s):  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Social Determinants Of Health ◽  
Sickle Cell ◽  
Social Determinants ◽  
Determinants Of Health ◽  
Cell Disease ◽  
Disease Outcomes ◽  
Psychiatric Conditions

Abstract 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. Disclosures No relevant conflicts of interest to declare.

scholarly journals Food insecurity and social support in families of children with sickle‐cell disease

2019 ◽  
Vol 95 (3) ◽  
pp. 306-313
Author(s):  
Isabel Nascimento dos Santos ◽  
Jorginete de Jesus Damião ◽  
Maria de Jesus Mendes da Fonseca ◽  
Cláudia dos Santos Cople‐Rodrigues ◽  
Odaleia Barbosa de Aguiar
Keyword(s):  
Social Support ◽  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Sickle Cell ◽  
Cell Disease

Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Cecelia Calhoun ◽  
Lingzi Luo ◽  
Ana A. Baumann ◽  
Anna Bauer ◽  
Evelyn Shen ◽  
...  
Keyword(s):  
Young Adults ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Adolescents And Young Adults ◽  
Urban Center ◽  
Cell Disease ◽  
Us Midwest

scholarly journals Food Insecurity and Quality of Life Among Children and Young Adults with Sickle Cell Disease

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 2283-2283
Author(s):  
Shelby Gruntorad ◽  
Tanisha Jones ◽  
Gabrielle Lapping-Carr ◽  
Radhika Peddinti ◽  
Wendy S Darlington
Keyword(s):  
Food Security ◽  
Sickle Cell Disease ◽  
Food Insecurity ◽  
Sickle Cell ◽  
Short Form ◽  
Age Groups ◽  
Cell Disease ◽  
Age Cohorts ◽  
Total Cohort ◽  
One Way Anova

Abstract Introduction: Sickle cell disease (SCD) is a genetic disorder affecting approximately 100,000 individuals in the United States. This autosomal recessive condition can result in numerous acute and chronic complications. Current research is ongoing to understand the pathophysiology as well as targetable options to remediate the disease. The Chicago Sickle Cell Disease Research Group (CSCDRG) at the University of Chicago aims to study how the social determinants of health, including food insecurity, impact patients with SCD. The USDA defines food insecurity as a lack of consistent access to enough food for an active, healthy life. We hypothesized a difference in quality of life (QOL) and level of food insecurity among patients with SCD by age. Methods: We designed a prospective cohort study combining basic demographic information and clinical data with two validated survey tools: the USDA Food Security Short Form and the PedsQLTM Sickle Cell Disease module. Eligible patients were identified from the CSCDRG clinical registry, capturing patients at our two clinical institutions. Consents and baseline surveys were collected during well visits in the clinic and then annually. Patient and parent reported baseline surveys were collected based on the PedsQLTM age cohorts (2-4 year, 5-7 year, 8-12 year, 13-17 year, and ≥18 year). Surveys scored and transformed with accepted methods: PedsQLTM total 0-100 and USDA Food Security total 0-6. We are reporting the initial set of baseline surveys collected from July 2015 to July 2018 with descriptive analysis of the cohort as well as ordinary one-way ANOVA testing to determine significance between each age group for total QOL scores, nine QOL dimensions, and food insecurity level. Results: Over the 3 year study period we enrolled and collected baseline surveys on 107 patients ranging in age from 2 - 24 years. Breakdown of the genotypes included 79% Hgb SS, 16% Hgb SC, and 5% Hgb Sβ+/0. Total average QOL scores for the cohort was 76, with the 2-4 year old cohort having the highest score at 88 and the ≥18 year cohort having the lowest score at 67. The QOL dimension with the lowest score was in communication II, with total cohort average at 67. The lowest QOL dimension by age cohort was in the ≥18 year cohort where the pain impact score was 53 with 58% scoring ≤60. Ordinary one-way ANOVA analysis between age cohorts was significant for total QOL score (p=0.009) and these individual dimensions: pain and hurt (p<0.0001), pain impact (p = 0.0008), pain management (p<0.0001), worry I (p=0.0119), treatment (p=0.0055), and communication II (p=0.0023). Over half of the total cohort (53%) utilizes a public food benefit program. USDA food security short form showed 35% of the total cohort had some level of food insecurity (Figure 1). Ordinary one-way ANOVA was not significant between age groups for food security (p=0.2863). Conclusion: We describe the QOL and food security levels in a cohort of patients with SCD located on the south side of Chicago. We note a significant difference in the total QOL score between age groups, which is consistent with work by other groups. In the ≥18 year cohort, we noted 38% and 58% of patients scored ≤60 in the pain and hurt and pain impact dimensions, respectively. Beverung et al (2015) suggested QOL scores ≤60 in SCD be considered significant, particularly in the pain and hurt and pain impact dimensions. We plan to examine this patient cohort closer to develop and provide innovative interventions and understand if there are other social determinants of health that would allow for identification of high risk groups. National estimates of food insecurity levels from 2015 note that 13.4% of all aged individuals and 17.9% of children experience some degree of food insecurity We have shown the rate of food insecurity in our study population is nearly double the rate of the national average. Although 53% of our population was found to utilize SNAP benefits 35% of the total cohort still described food insufficiencies. It will be important for future studies to assess the utilization of other public benefit program such as Special Supplemental Nutrition Program for Women, Infants, and Children (WIC), which ends at age 5, as we noted an increase in food insecurity for our 5-7 year cohort. Next steps include further examining potential relationships between QOL scores, acute care utilization, and food insecurity as we increase the number of patients enrolled. Disclosures No relevant conflicts of interest to declare.

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