Evaluation of Capacity for Implementation of Pediatric-to-Adult Care Transition for Sickle Cell Disease in Brazil

Abstract

Background In low- and middle-income countries (LMICs), such as Brazil, survival rates for sickle cell disease (SCD) patients are approaching 80%. As more adolescents with SCD survive into adulthood, it is essential to establish proper preparation and integration into adult care. Healthcare Transition (HCT) programs can assist in transitioning pediatric patients with chronic illnesses into adult care, but such programs are not yet available in Brazil. Therefore, it is crucial to evaluate the capacity for implementing HCT practices before initiating such a program. Methods We undertook an assessment of the capacity for HCT implementation using the Context Assessment for Community Health (COACH) tool andmeasured the level of transition practices using the Current Assessment of HCT Activities for Transitioning Youth to an Adult Health Care Clinician (GotTransition HCT activities scale). These tools were administered at two institutions in the two largest cities in Brazil, Rio de Janeiro and São Paulo. As a comparison, data was collected from an institution in the United States (US) with a well-functioning HCT program. The COACH tool, a validated measure of resource capacity, consists of 49 items with eight subscales which were adapted to HCT: resources, community engagement, work commitment, informal payment, leadership, work culture, monitoring services (5-point scale, lower values reflecting less capacity), and sources of knowledge (0-1 scale, lower values reflecting less capacity). GotTransition, an assessment of current health care skills for transition to adult care, consists of eight components scored on a 1-4 scale with higher scores representing higher engagement with transition activities. Survey participants were healthcare staff caring for children and adults with SCD. Surveys were completed on the online platform Qualtrics from February to July 2023. Statistical analysis was conducted using SAS version 9.4. Results 86 staff from the SCD clinics completed the COACH tool (26 from the US and 60 from the Brazilian institutions). Of those, 78% were female and 38% were aged 40-54. 55 participants (64%) identified the role of physician or high-level/advanced care provider, the remaining were psychologists, social workers, and community partners (Table 1). Completion rate was 81% (26 out 32) for the US and 75% (60 out of 80) for the Brazilian institutions. Overall, COACH showed high internal consistency (Cronbach's α range: 0.69-0.93). The lowest-scored subscales by all institutions were community participation and unofficial payments, with average scores of 2.96 and 2.33, respectively. The highest-rated subscales were leadership and work culture, with average scores of 3.99 and 3.97, respectively. Resource availability, work commitment, and community participation were lower in Brazil, relative to the US, (2.94, 3.03 vs. 4.08, p<0.0001 and 3.68, 3.49 vs 4.25 p=0.03, and 2.57, 2.85 vs 3.64 p=0.04 respectively). No significant differences in occupation were noted across all subscales (p>0.05). A total of 15 SCD clinic leaders, all physicians (3 from the US and 12 from the Brazilian institutions) across the three institutions completed the GotTransition HCT activities survey. Overall scores were approximately twice higher in US than in Brazilian institutions (15.29, 15.8 vs 30.33), with all subdomains scoring lower for the Brazilian institutions (Table 2). Discussion Implementation of HCT programs is a high priority in Brazil, given the growing survival rates for children with SCD. Our data highlights a well-connected community of healthcare workers, but also reveals that the current level of HCT activities for SCD in Brazil is low. This underscores the urgent need for transition intervention. The key facilitators for successful HCT implementation in Brazil are strong leadership and a motivated workforce. However, community participation and finances are weak points that require implementation strategies during program implementation. Compared to the US, both Brazilian institutions scored significantly lower on all components needed for transition, emphasizing the need for intervention. This project is the first to evaluate the readiness for HCT implementation in a low- and middle-income country. Designing a context-specific HCT program that suits low-resource settings will improve outcomes for individuals with SCD in the country.