THE DANGER OF BEING LOST IN TRANSITION: THE LACK OF STRUCTURED TRANSITION PROGRAMS FROM PEDIATRIC TO ADULT HEMATOLOGY CARE IN BRAZIL ACCORDING TO A NATIONAL SURVEY

@article{hoepers2026danger,
  title = {{THE DANGER OF BEING LOST IN TRANSITION: THE LACK OF STRUCTURED TRANSITION PROGRAMS FROM PEDIATRIC TO ADULT HEMATOLOGY CARE IN BRAZIL ACCORDING TO A NATIONAL SURVEY}},
  author = {Andrea Thives de Carvalho HOEPERS and Josefina Aparecida Pellegrini BRAGA and Verena PFISTER and Stefane Caroline Pereira DA SILVA and Adriana SEBER and Alayde Vieira WANDERLEY and Luiz Guilherme DARRIGO JR and Mariana Bohns MICHALOWSKI and Mônica Pinheiro de Almeida VERíSSIMO and Sandra Regina LOGGETTO},
  journal = {Hematology, Transfusion and Cell Therapy},
  year = {2026},
  month = oct,
  doi = {10.1016/j.htct.2026.108380},
  url = {https://doi.org/10.1016/j.htct.2026.108380},
  note = {CC BY},
}

TY  - JOUR
TI  - THE DANGER OF BEING LOST IN TRANSITION: THE LACK OF STRUCTURED TRANSITION PROGRAMS FROM PEDIATRIC TO ADULT HEMATOLOGY CARE IN BRAZIL ACCORDING TO A NATIONAL SURVEY
AU  - Andrea Thives de Carvalho HOEPERS
AU  - Josefina Aparecida Pellegrini BRAGA
AU  - Verena PFISTER
AU  - Stefane Caroline Pereira DA SILVA
AU  - Adriana SEBER
AU  - Alayde Vieira WANDERLEY
AU  - Luiz Guilherme DARRIGO JR
AU  - Mariana Bohns MICHALOWSKI
AU  - Mônica Pinheiro de Almeida VERíSSIMO
AU  - Sandra Regina LOGGETTO
PY  - 2026
DA  - 2026/10/23
JO  - Hematology, Transfusion and Cell Therapy
DO  - 10.1016/j.htct.2026.108380
UR  - https://doi.org/10.1016/j.htct.2026.108380
AB  - Background: Advances in pediatric hematology have increased survival, making the transition to adult care essential. However, the preparedness of Brazilian hematology services for structured transition remains unknown. Objectives: To assess the availability of structured transition programs in Brazil, identify barriers to implementation, and understand hematologists' priorities and perception of benefits of the transition of care programs. Methods: A nationwide cross-sectional survey was conducted by the Brazilian Association of Hematology, Hemotherapy and Cellular Therapy (ABHH) between September and October 2025. Pediatric and adult hematologists completed an anonymous online questionnaire addressing transition of care program availability, institutional organization, inter-service communication, barriers, eligibility criteria, and implementation strategies. Descriptive statistics were used. Results: 26 hematologists from nine states and the Federal District participated; 92% worked within the Brazilian Unified Health System (SUS). Only five (19%) reported to have a structured transition of care program. Sickle cell disease (SCD) was most frequently identified as a priority for structured transition, followed by other hereditary anemias. Major barriers included fragmented pediatric and adult services (67%), lack of standardized protocols (62%), patient/family anxiety (62%), limited inter-team communication (52%), and concerns about patient adherence after transferring from pediatric to adult care (52%). The respondents with structured programs more often reported joint pediatric-adult consultations (80% vs. 38%), shared electronic medical records (100% vs. 71%), and continuity of care within the same institution after transfer (80% vs. 43%). Expected benefits were improved adherence, reduced loss to follow-up, greater patient autonomy, and better communication among pediatric and adult teams. Key implementation strategies included standardized protocols, adolescent-focused professional training, and monitoring patients at risk of being lost of follow up. Discussion: Despite broad recognition of its importance, the availability of a structured transition remains uncommon in Brazilian hematology. Similar barriers have been described internationally, including fragmented healthcare systems, limited communication between pediatric and adult teams, and absence of standardized transition pathways. Although SCD emerged as the leading priority because of its lifelong care needs and the vulnerability of adolescents during transfer, structured transition should also encompass other hereditary anemias, bleeding disorders, and pediatric hematological malignancies. The organizational characteristics reported by centers with structured programs, such as joint consultations, shared electronic medical records, and continuity within the same institution, highlight practical models that may facilitate broader implementation. These results support the development of national transition guidelines and multidisciplinary training initiatives tailored to the Brazilian context. Conclusions: Structured transition programs remain uncommon in Brazilian hematology services despite broad recognition of their clinical importance. These results support the development of national transition guidelines and multidisciplinary training initiatives tailored to the Brazilian context.
SN  - 2531-1379
SN  - 2531-1387
ER  -