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Updated: Dec 25, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Rate of Food Insecurity Among Households with Children with Sickle Cell Disease is Above the National Average
Djamila Labib Ghafuri1, Mark Rodeghier1, Michael Rutledge DeBaun1
1From the Department of Pediatrics, Vanderbilt-Meharry Meharry Center of Excellence in Sickle Cell Disease, Vanderbilt University of Medicine, Nashville, Tennessee, and Rodeghier Consultants, Chicago, Illinois.
Objectives:
Despite studies demonstrating the negative impact of food insecurity on health in children, limited research has been done to assess the prevalence and sequelae of food insecurity in sickle cell disease (SCD). We tested the hypothesis that food insecurity is common in children with SCD and is associated with increased SCD morbidity.
Methods:
Between May and November 2017, we conducted a single-center cross-sectional study using the previously validated, self-administered, US 18-item household food security survey module and the 9-item youth (12-17 years old) food security survey module during regular outpatient clinic visits. We also included the incidence of vaso-occlusive pain or acute chest syndrome requiring hospitalizations in the year before the questionnaire.
Results:
A total of 75 caregivers and 24 children completed the surveys. The median age of the children was 10.4 years (interquartile range 5.5-15.3), 46.7% were boys. The rate of household food insecurity was 21.3% (16 of 75). Among the 24 children who completed the youth survey, 45.8% were classified as food insecure. Discordance occurred between caregivers' and children's assessment of food insecurity. A total of 81.8% (9 of 11) children reported being food insecure, whereas their caregivers reported to be food secure. The incidence for pain and acute chest syndrome in the year pre-enrollment was not different between food-secure and food-insecure children (59.3 and 43.8/100 patient-years, P = 0.54; 8.5 and 12.5/100 patient-years, P = 0.49, respectively).
Conclusions:
In a tertiary care medical center in Tennessee, one in five households with children with SCD were assessed as food insecure, with a substantial discordance between caregiver and child assessment of food insecurity.
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