Publication:

Developing and testing sickle cell trait awareness messages to strive towards consistent and accurate education

Background Sickle cell trait is often misrepresented as benign, leading to misinformation and a lack of awareness about potential health complications. In the United States, 1 in 13 Black individuals are affected, though people of any race or ethnicity can have the condition. Misconceptions, systemic racism, and underfunded research contribute to inconsistent communication and education. To that end, this initiative aimed to identify gaps in awareness and education and develop consistent, comprehensive, scientifically informed messages to improve public understanding. The goal was for these messages to be adopted by sickle cell trait organizations nationwide to promote consistency in education and communication.

Methods Using a mixed-methods approach, 19 key stakeholders including sickle cell organizations, medical experts, and individuals with sickle cell trait were engaged to identify communication gaps. The consolidated framework for implementation research (CFIR) guided survey and interview analysis, ensuring a structured approach to understanding stakeholder perspectives. The nominal group technique (NGT) validated findings during expert meetings, helping achieve consensus on messaging before testing with the sickle cell trait community.

Results Findings highlighted inconsistent messaging, limited public understanding, insufficient research funding, and inadequate provider knowledge. Stakeholders and community members stressed the need for accurate, culturally sensitive, consistent, and accessible messaging to improve awareness and patient-provider communication.

Conclusions Through collaboration and community validation, evidence-based messages were developed to promote informed decision-making, encourage self-advocacy, and enhance provider-patient communication. Standardized messaging is essential to combat misinformation, raise awareness, and improve health outcomes for individuals with sickle cell trait.