Barriers and Facilitators to Chronic Red Cell Transfusion Therapy for Children with Sickle Cell Anemia: Results from the Displace Consortium

Introduction: Chronic red cell transfusion therapy (CRCT) is one of the only disease-modifying therapies for individuals with sickle cell anemia (SCA). CRCT plays a particularly critical role in stroke prevention for children with SCA who are at high risk (primary prevention) or who have had a previous stroke (secondary prevention). CRCT is also used to prevent other non-neurologic severe complications from SCA, such as recurrent splenic sequestration or severe acute chest syndrome. Only a few previous studies have focused on patient and provider experiences related to CRCT. This previous work has predominantly focused on patient/caregiver perceptions of children's quality of life while receiving CRCT and provider decision-making around CRCT for SCA. The present study sought to build on this previous work by examining barriers and facilitators to CRCT for stroke prevention as part of the aims of the Dissemination and Implementation Looking at the Care Environment (DISPLACE) study. DISPLACE is a multi-site study funded to evaluate and improve implementation of stroke prevention practices for SCA. The goal of this particular aim was to inform optimal strategies to enhance CRCT initiation for stroke prevention in SCA.

Methods: A qualitative descriptive approach was used to obtain provider and patient/caregiver perspectives through key informant interviews with open-ended questions. Purposive sampling was used to identify patient/caregiver participants and purposive and snowball sampling were used to identify provider participants with the goal of enrolling participants until data saturation was reached. Interviews were digitally audio recorded and transcribed for analysis. Data were analyzed using inductive and deductive approaches. Deductive analysis followed the directed content analysis approach with the Multilevel Ecological Model of Health as an initial coding framework. Themes were developed around the barriers and facilitators to CRCT from an ecological perspective.

Results: Fifty-two interviews were completed across patients/caregivers and providers (27 patient/caregivers and 25 providers) in order to reach data saturation. For patient/caregivers, 26 caregivers of children and adolescents with SCA (mean age = 39; 21 mothers, 4 fathers, and 1 aunt) and one young adult (age 18, female) completed interviews. For providers, 19 physicians, 2 nurse practitioners, 1 physician assistant, and 3 ancillary providers completed interviews (mean age = 50; 14 female; mean years of practice in SCA = 18.8). Patient/caregiver and provider themes were consistent with the multi-ecological framework and reflected barriers and facilitators at the patient, provider, organizational, and social-environmental/policy levels (Figure 1). Predominant (or high-frequency) themes with definitions and illustrative quotes are presented in Table 1. Predominant barriers reported by patients/caregivers and providers included: logistical challenges (patient level), obtaining and maintaining venous access (patient level), and alloantibodies/alloimmunization and transfusion reactions (patient level). A predominant barrier reported by providers was iron overload and adherence to chelation therapy (patient level). Predominant facilitators reported by patient/caregivers and providers included: nursing and non-nursing staff support (provider level), positive child/family experience (organizational level), and logistical help and social resources (social-environmental and policy level). Predominant facilitators reported by providers included transfusion-specific resources (organizational level) and proximity to a blood bank and access to blood (organizational level).

Conclusions: Patient/caregivers and providers reported a range of barriers and facilitators to CRCT, though most occurred at the patient and organizational levels. Many of the barriers and facilitators also involved interactions across ecological levels. Results suggest interventions should address predominant and remediable barriers (e.g., logistical challenges and obtaining and maintaining venous access) and incorporate predominant facilitators (e.g., nursing and non-nursing staff support and positive child/family experience). Findings from this study may be used to guide interventions for improving CRCT initiation among children with SCA.

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