Tailoring pediatric to adult care transition from high to low-resource settings: A user-centered design approach

Abstract

Abstract Background Brazil is home to one of the largest populations of individuals with sickle cell disease (SCD) in the world, with an estimated 100,000 affected individuals. Advances in pediatric care have increased life expectancy, resulting in a growing cohort of adolescents and young adults (AYA). However, as these patients age into adulthood, they face increasing challenges including higher rates of morbidity and mortality. These outcomes are likely multifactorial, driven by worsening disease severity, poor access to specialized care in adulthood, and most notably, a lack of structured healthcare transition (HCT) processes. In high-income countries like the United States, certain HCTs, such as GotTransitionTM, are widely accepted and evidence-based frameworks that guide the transition of care for youth with chronic health conditions. GotTransitionTM includes six core elements: transition policy, tracking and monitoring, readiness assessment, planning, transfer of care, and transfer completion. This framework has not yet been systematically adapted for use in low- and middle-income countries (LMICs) like Brazil, where healthcare systems, resources, culture, and patient experiences differ significantly from the original context of the GotTransitionTM model. The objective of this project was to collaboratively adapt the HCT framework for Brazilian AYA with SCD by co-designing a transition toolkit specifically contextualized to Brazil's social, medical, and cultural environments. The project focused on two major Brazilian cities: Rio de Janeiro and São Paulo. Methodology To adapt the GotTransitionTM framework, we employed a user-centered design (UCD) methodology, emphasizing continuous collaboration with end-users—patients, families, and clinicians. The three iterative steps of UCD were followed: (1) identifying users' needs, (2) specifying user-centered requirements, and (3) designing appropriate solutions. A binational team consisting of clinicians from Brazil and the United States held monthly bilingual meetings, conducted in both English and Portuguese with real-time translation to ensure effective communication and equitable input. The meetings created a structured platform to share expertise, reflect on local practices, and modify tools to suit Brazil's healthcare landscape. Results To understand the unique needs of Brazilian youth with SCD and their providers, Step 1 of the UCD involved a comprehensive needs assessment using a mixed-methods approach. Surveys and semi-structured interviews were conducted at both sites. Key findings included a strong, connected SCD community and passionate providers, but few formal HCT activities. Patients reported uncertainty about the transition process and a lack of preparation or guidance. In Step 2, we collaboratively reviewed the GotTransitionTM framework with the Brazilian team, discussing its applicability, challenges, and potential adaptations. Participants highlighted the importance of simplifying the process for patients and providers, adopting a more culturally resonant and patient-centered approach, and offering clear role delineation within the healthcare team. Step 3 led to the co-development of the BRASIL toolkit, a Portuguese-language acronym that encapsulates the six core elements of HCT and the values important to Brazilian families and clinicians. The toolkit outlines key transition activities, identifies responsible team members for implementation, defines resource requirements, and integrates locally appropriate assessment tools:Buscar aumentar conhecimento (Build knowledge)Registrar o progresso (Record progress)Avaliar a capacidade e compreensão (Assess readiness)Saber quando a começa a transição (Start transition with a holistic approach)Ida ao novo prestador de cuidados de saúde (Increase self-empowerment)Ligação ao atendimento de adultos (Link to adult care) Conclusion Through a rigorous and collaborative UCD process, we successfully adapted the GotTransitionTM framework to meet the needs of AYA with SCD in Brazil. The co-created BRASIL toolkit preserves the foundational structure of the original six core elements while incorporating culturally sensitive modifications. This toolkit provides a practical, contextually grounded resource to guide providers, patients, and families through the transition process. It is currently undergoing pilot feasibility testing, with the aim of future scale-up across other Brazilian states and potentially other LMICs.