Dietary Intake and Dietary Behaviors in Adults With Sickle Cell Disease

Study Description:

This study seeks to determine dietary intake and behaviors of adults with Sickle Cell Disease through the use of a cross-sectional design using mixed methods. The premise for the study is based on the potential role of nutritional status in sickle cell disease outcomes in physical health and psychosocial health. The study will recruit outpatient adults with the diagnosis of Sickle Cell Disease, and will include patients with multiple clinical phenotypes and genotypes.

Objectives:

Primary Objective: The primary objective is to assess the dietary intake and behaviors of outpatient adults with SCD within the context of social determinants of health.

Secondary Objective 1: Identify associations between dietary intake and behaviors with clinical severity outcomes.

Secondary objective 2: Identify associations between dietary intake and behaviors with psychosocial variables.

Secondary objective 3: Identify associations between food access and dietary intake and behaviors.

Endpoints:

Primary Endpoint: Measure dietary intake and behaviors using 24-hour dietary recall data, participant survey responses and diet-related laboratory results

Secondary Endpoints: Identify associations between dietary intake and behaviors with: 1) social determinants of health (related to socioeconomic status, birthplace, neighborhood disadvantage, food environment); 2) clinical variables SCD of genotype, clinical phenotype (SCD related diagnoses and complications), clinical severity (chronic pain severity and frequency), medication use and

history of treatments, and SCD related laboratory studies; 3) psychosocial variables of mood, self-esteem, perceived stress, social support, self-mastery, self-compassion, racial identity, and stigmatization as measured by self-reported responses.

• INCLUSION CRITERIA:

In order to be eligible to participate in this study, the participant must:

• State their willingness to complete all study procedures for the duration of the study
• 18 years of age or older at the time of screening
• Have a documented clinical diagnosis (upon review of medical records) of SCD or presence of a SCD hemoglobinopathy genotype HbSS, HgSC, HbSB 0 or HBSB+

Exclusion criteria

The following criteria will exclude any individual from participating in the study:

• Less than 18 years of age
• Unable to speak, read, write, and/or understand English
• Presence of a condition or illness that will hamper the individual from giving informed consent (e.g. cognitive impairment)
• SCD trait genotype
• Currently undergoing inpatient treatment in any hospital for SCD at the time of screening
• Pregnancy at the time of screening