“I think if we don’t eat well, we will be sicker”: a qualitative perspective on contributing factors to diet intake and nutrition among adults living with SCD in the United States

Objectives: SCD is a monogenic condition with complex pathophysiological pathways influenced by nutrition. While dietary management is recognized in pediatric SCD populations, the role of diet in symptom variability and disease severity among adults living with SCD has not been widely reported nor systematically studied. This study utilizes qualitative data to investigate intrapersonal and environmental facilitators and barriers to dietary intake among adults with SCD. Methods: This cross-sectional, single-site mixed-methods study (NCT05170412) included 47 adults living with SCD from multiple US regions through in-person and telehealth visits. Data collection involved semi-structured interviews, dietary recall surveys, and clinical assessments. Thematic analysis using iterative coding identified key themes related to food choices, symptom management, and social determinants of health. Results: Participants reported that economic constraints, food environment limitations, and acute symptoms disrupted dietary intake. Food insecurity risk was prevalent, with many residing in low-income, low-access areas. Barriers included high costs of nutritious foods and work-related dietary restrictions. Facilitators included social support, cultural food preferences, and access to reliable nutritional information. Participants expressed interest in dietary self-management strategies, but cited limited access to professional dietary guidance. Conclusions: For adults with SCD, diet and nutrition are significantly related to symptoms. Food access, symptom-related dietary interruptions, and cultural preferences shape dietary behaviors. These findings highlight the need for personalized dietary interventions, improved food access, and clinician-guided nutritional education. Addressing these factors could enhance self-management strategies related to diet and overall disease outcomes.