Nutrition needs assessment for sickle cell disease throughout the lifespan

Abstract Introduction: Patients with sickle cell disease (SCD) experience a range of debilitating symptoms, including vaso-occlusive crises and progressive organ damage. In addition to these clinical challenges, they often encounter structural barriers such as limited access to education, healthcare, and adequate nutrition. Both macro- and micro-nutrient deficiencies are common and can further exacerbate the severity of SCD symptoms. Despite this, there is a notable lack of targeted nutritional interventions for individuals living with SCD. This research aims to identify gaps in nutritional knowledge among patients and caregivers, with the goal of informing health care clinicians about preferred strategies for delivering effective, patient-centered nutrition education interventions. Methods: An anonymous RedCap questionnaire was administered to caregivers and patients with SCD at pediatric and adult SCD specialty clinics between June and October 2024. The questionnaire consisted of nine nutrition-related questions using Likert scaling and was created by the research group. Participants who indicated interest were offered the opportunity to participate in an anonymous virtual focus group. Two groups were conducted in April 2025 and August 2025 with caregivers and adults with SCD, during which patients participated in a semi-structured interview, building on themes of interest identified in the questionnaire. Results: Thirty-seven participants completed the initial questionnaire. The respondents endorsed an interest in learning more information about the relationship between nutrition and SCD; approximately 78% of respondents agreed or strongly agreed. Furthermore, questionnaire respondents reported a preference for virtual educational content as opposed to at-home cooking lessons or in-person classes. The questionnaire showed that SCD patients felt informed on nutrition by their doctor, with 73% in agreement or strong agreement. However, the individuals in the first focus group stated that they do not feel sufficiently informed about nutrition by their provider. Additionally, the four participants in the first focus group advocated for in-person group sessions for nutrition education as well as emails and newsletters. Conclusion: The results of this research provide valuable insight into the preferences of SCD patients and caregivers for nutrition education as it relates to their disease. Both the questionnaire and focus group showed a strong understanding of the importance of nutrition in disease management. Patients and families universally desire more nutritional education. Despite this similarity, there was a difference in the methods preferred by the questionnaire and focus group individuals. The individuals who completed the questionnaire preferred virtual methods, while the focus group individuals more strongly preferred in-person group sessions. These results are valuable in understanding the needs of the SCD population and serve as an important foundation for designing and implementing interventions that are of benefit to the patient and caregiver community.