Key Findings
- Purpose
To examine intrapersonal and environmental facilitators and barriers influencing dietary intake among adults living with sickle cell disease (SCD) using qualitative interviews within a mixed-methods study, and to better understand how diet and nutrition relate to symptom management and non-medical factors that affect health outcomes. - Population (Model)
Single-site, cross-sectional mixed-methods study involving 47 adults with SCD recruited from multiple U.S. regions through in-person and telehealth visits. Data collection included semi-structured interviews, 24-hour dietary recalls, clinical assessments, and thematic analysis using iterative coding with participant validation interviews. Participants had a mean age of 41.9 years; 63.8% had HbSS, 76.6% lived in low-income, low-food-access (LILA) areas, and 32.7% screened positive for at least one level of food insecurity. - Headline Result
Participants described a bidirectional relationship between nutrition and SCD symptoms: disease symptoms often disrupted appetite, food preparation, and dietary intake, while many believed healthier eating supported symptom management and overall well-being. Major barriers included economic constraints, limited access to nutritious foods, food insecurity, work-related dietary restrictions and limited healthy options at work, food sensitivities, and symptom-related dietary interruptions. Facilitators included family and social support, cultural food preferences, cooking at home, and access to reliable nutrition information. Many participants also expressed a desire for greater clinician- and dietitian-guided nutrition education. - Why It Matters
Nutrition represents an important but often underaddressed component of comprehensive SCD care. This study suggests that dietary behaviors are shaped not only by disease symptoms but also by economic circumstances, food access, cultural traditions, and available support systems. Integrating individualized nutrition counseling and dietary education into routine SCD care may strengthen self-management strategies and improve overall health, although the study does not establish causal relationships between dietary changes and clinical outcomes.
- Evidence Gaps & Limitations
This qualitative study reflects patient experiences and perceptions rather than demonstrating causal effects of nutrition on disease outcomes. It was conducted at a single research site with a relatively small sample and may be subject to selection bias. These findings support the need for larger, multicenter studies to evaluate how dietary interventions, nutrition education, food insecurity, cultural dietary practices, and access to healthy foods influence clinical outcomes and long-term self-management in adults with SCD.
Source: Journal of Sickle Cell Disease- “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”
Regulatory & Guideline Watch
Major clinical guidelines for SCD emphasize comprehensive, multidisciplinary care, but do not yet offer detailed, disease-specific dietary recommendations beyond general healthy eating principles. The study’s findings highlight that clinician-guided nutrition counseling and personalized dietary interventions may be important components of comprehensive SCD care, while recognizing that additional evidence is needed before nutrition-specific recommendations can be incorporated into future guidelines.