Assessing Primary Stroke Prevention Barriers and Facilitators in Children with Sickle Cell Anemia in Puerto Rico: A Mixed Methods Study Design

Introduction: Overt strokes are one of the greatest complications in children with sickle cell disease (SCD). Without intervention, ~11% of children with sickle cell anemia (SCA) develop a stroke before age 20. Transcranial Doppler (TCD) ultrasound identifies high-risk children, and chronic red cell transfusion (CRCT) therapy significantly reduces stroke risk in those with abnormal TCD velocities (>200 cm/s). Despite NHLBI and American Society of Hematology guidelines recommending annual TCD screenings and CRCT therapy, implementation is suboptimal. In Puerto Rico, the TCD screening rate for children with SCD is unclear. Preliminary data from the University Pediatric Hospital's SCD clinic indicated only ~45% of eligible patients received TCD screenings over 12 months. This study aims to identify barriers and facilitators to TCD screening and routine care of children with SCD through parent focus groups and faculty semi-structured interviews. The long term goal is to design sustainable interventions for stroke prevention in children with SCA in Puerto Rico.

Methods: This was a mixed methods design study to assess barriers and facilitators to TCD screening and routine care in children with SCD at the University of Puerto Rico Pediatric Hospital SCD clinics. IRB approval and consent from participants was obtained. Semi-quantitative faculty interviews and qualitative focus groups were based on the Consolidated Framework for Implementation Research. Seventeen parents/caregivers of children (2-18 years) with SCD (SS, SB⁰, and SB⁺) followed at the University Pediatric Hospital hematology clinics, were recruited for focus groups. Six faculty and hospital administrators with direct involvement in SCD care or radiology services participated. Pre-focus group surveys with Likert scales were administered to 17 caregivers and analyzed via frequency analysis. Eight parents participated in focus groups, and five faculty were interviewed. Sessions were conducted in Spanish and translated into English. Data were analyzed using an inductive-deductive approach based on Social-Ecologic theory, identifying key barrier and facilitator themes. Frequency analysis was performed to identify predominant barrier and facilitator themes.

Results: Twenty-four barrier themes and fourteen facilitator themes were identified in faculty interviews; fourteen barrier themes and eleven facilitator themes were identified in parent focus groups. Regarding routine clinic visits, faculty identified the lack of clinic resources as the most significant barrier. Parents determined clinic costs, emphasizing clinic parking, as the most significant barrier to assisting their routine clinic visits. As a barrier to TCD screening, all five faculty identified the most significant barrier as a lack of clinic personnel capacitated for TCD screening, recognizing the need for technical personnel training and additional radiology technicians/Radiologists. Parents determined that TCD appointment availability and coordination limitations were the most significant barriers to routine TCD screening. An important subcode repeated throughout focus groups was the fact that limited centers perform TCD in children on the island.

The most significant faculty facilitator theme for improving routine clinical care was improving provider education to parents; all five recommended providing more educational conferences and audiovisuals to parents. Parents stated that improving direct communication with clinic personnel would be more beneficial than this, expressing that they found calls reminding them of visits especially helpful in maintaining routine care. Both groups agreed that the most significant theme for facilitating routine TCD screening was improving TCD scheduling and availability. All five faculty specifically emphasized the importance of being able to perform TCDs on the same day of patients' clinic visits.

Conclusions: Children with SCD in Puerto Rico face unique challenges to stroke prevention and routine care because they live on an island without contiguous access to the mainland. Limited access to centers that perform TCD screening in children is exacerbated by this isolation. By collecting the predominant barriers and facilitators in this study, we can now address important factors to improve routine care and stroke prevention screening in children with SCD in Puerto Rico.