Nutrition Access in Adult Sickle Cell Patients: An Exploratory Study

Background

Sickle Cell Disease (SCD) is the most common lethal genetic blood disease in the world, impacting approximately 100,000 people in the US, and about 25 million people worldwide (WHO, CDC 2019). Some literature refers to the SCD patients' barriers to appropriate care as "biopsychospiritual," indicating the complexity of the disease, and hence, call for a multi-dimensional approach to care (Adegbola et al., 2012). Considering the role of energy, protein and Vitamin D deficiency in SCD patients, a multi-dimensional approach to care that includes nutritional supplementation is worth investigating (Hyacinth, Gee and Hibbert 2010). There is limited research that illuminates the relationship between nutrition, food insecurity and health outcomes of those with SCD. Patients with SCD experiencing challenges of undernutrition are more prone to growth retardation in childhood, disease exacerbation, impaired immune function, and poor ulcer healing among other complications (Mandese et al., 2015).

In Chicago, Illinois on the South and West Side where many SCD patients live, it is estimated that 35.1%-57.8% of people are food insecure (Gunderson, Dewey, Crumbaugh,Kato & Engelhard, 2016). This study aims to better understand food insecurity for SCD patients at the University of Illinois Hospital and Health Science Systems (UIHHSS) in Chicago, the largest adult sickle cell center in the Midwest. Physicians are uniquely positioned to address health inequities among their patients when they practice patient centered-care (Law, Leung, Veinot, Miller & Mylopoulos, 2016). Research shows that healthcare providers who are aware of external factors such as food insecurity, can be better advocates for their patients, and help them find ways to gain access to healthy foods (Nesbitt and Palomarez, 2016).

Methods

An exploratory study involving data collection of patient demographics, food consumption, and ability to access food was conducted. All patients at the Sickle Cell Clinic at UIHHSS who were interested in participating received a full explanation of the purpose of the study.Twenty-seven adult patients (19 female, 8 male) were recruited in the Sickle Cell Center waiting room. Food intake by patients with SCD was documented using the validated Food Insecurity Experience Scale (FIES) from the Food and Agriculture Organization (FAO). Participants self-administered the FIES questionnaire, followed by a one-on-one discussion with the interviewer. Qualitative data gathered from the follow-up interviews was used to investigate themes and provide clarity. Demographic information was collected to supplement the screening tool, as it is not a sufficient stand alone measure. Patient zip codes were referenced with the Distressed Community Index (DCI), a comparative measure of community well-being using census bureau data from 2012-2016.

Outcomes

Results of the analysis indicated the nutritional status of sickle cell patients and identified barriers to food access especially economic factors. Of the twenty-seven patients interviewed, 40% screened moderate and 22% screened as severe for food insecurity. The remaining 48% screening negative for food insecurity, but 80% of all patients did not consume the daily recommended dietary allowance of vegetables and fruits, and 44% worried about having enough money for food, citing that the cost of healthy food was a barrier to eating healthy. Based on zip code, 80% of patients live in a high DCI zone.

Discussion and Limitations

This study utilizes convenience sampling with a small sample size, which limits external validity. Conclusions from the data should not be made, but rather used to design larger confirmatory studies. The information could aid in aligning undernourished patients with social support and provide potential insight for clinicians into the management of patients with SCD.