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Updated: Sep 5, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Barriers and Facilitators to Chronic Red Cell Transfusion Therapy in Pediatric Sickle Cell Anemia
Alyssa M Schlenz1, Shannon M Phillips2, Martina Mueller2,3
1Department of Pediatrics, 12225University of Colorado School of Medicine, Aurora, CO, USA.
Insights
Chronic red cell transfusion (CRCT) therapy for children with sickle cell anemia (SCA) faces logistical and medical barriers. Addressing these challenges through improved resources and staff support can enhance treatment effectiveness for patients and providers.
Area of Science:
- Pediatric Hematology
- Transfusion Medicine
- Qualitative Health Research
Background:
- Chronic red cell transfusion (CRCT) is a key disease-modifying therapy for pediatric sickle cell anemia (SCA).
- CRCT is vital for stroke prevention and managing other SCA complications.
- CRCT presents significant resource and time demands on patients, families, providers, and healthcare organizations.
Purpose of the Study:
- To conduct a comprehensive, multilevel examination of barriers and facilitators to CRCT in children with SCA.
- To explore these barriers and facilitators from both healthcare provider and caregiver perspectives.
- To identify strategies for improving CRCT delivery and outcomes in pediatric SCA.
Main Methods:
- A qualitative descriptive approach utilizing key informant interviews.
- Interviews conducted with 26 caregivers and 25 healthcare providers across the United States.
- Data analyzed using directed content analysis and the constant comparison method, guided by the Multilevel Ecological Model of Health.
Main Results:
- Ten distinct barrier themes and 10 facilitator themes were identified across ecological levels, predominantly at the patient and organizational levels.
- Key barriers included logistical challenges, venous access difficulties, alloimmunization/reactions, and iron overload/chelation adherence issues.
- Key facilitators involved staff support, positive patient/family experiences, logistical/social resources, blood bank efficiency, and transfusion-specific resources.
Conclusions:
- Understanding multilevel barriers and facilitators is crucial for optimizing CRCT in children with SCA.
- The findings can inform the development of targeted strategies to improve CRCT for patients, families, and providers.
- These insights are applicable to organizations aiming to implement or enhance transfusion services for pediatric SCA.
Abstract:
Background: Chronic red cell transfusion (CRCT) therapy is one of a few effective disease-modifying therapies for children with sickle cell anemia (SCA). CRCT is recommended for primary and secondary stroke prevention for at-risk children with SCA and is sometimes used for other disease-related complications. However, CRCT can be resource- and time-intensive for patients/families, providers, and organizations. This study was conducted to provide a comprehensive, multilevel examination of barriers and facilitators to transfusion therapy in children with SCA from health care provider and caregiver perspectives. Methods: A qualitative descriptive approach was used to conduct key informant interviews in a sample of 26 caregivers and 25 providers across the United States. Interviews were analyzed using directed content analysis with the Multilevel Ecological Model of Health as an initial coding framework and the constant comparison method. Results: Ten barrier themes and 10 facilitator themes emerged across all ecological levels. Themes most commonly occurred on the patient and organizational levels. Key barriers themes included Logistical Challenges, Obtaining and Maintaining Venous Access, Alloantibodies/Alloimmunization and Reactions, and Iron Overload and Adherence to Chelation Therapy. Key facilitator themes included Nursing and Non-nursing Staff Support, Positive Child/Family Experiences, Logistical Help and Social Resources, Blood Bank and Access to Blood, and Transfusion-Specific Resources. Discussion: The comprehensive understanding of multilevel barriers and facilitators to transfusion therapy, including the role of nursing, in children with SCA can inform strategies to improve CRCT for patients/families and providers and can also be applied by organizations seeking to implement transfusion services for SCA.
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