Data Managers at Hematopoietic Cell Transplant Centers in Brazil: Overall Picture

Adriana Mendes Cavilha, Ms. Heliz Regina A. Neves,Cinthya Corrêa Silva, Antonio Macedo, Anderson João Simione, Paula Moreira da Silva Sabaini,Leonardo Jun Otuyama, Bruna Letícia da Silva Santos Geraldo,Mary E.D. Flowers,Eliana C M Miranda, Afonso C Vigorito, Thiago Quintas Camara,Vaneuza Araújo Moreira Funke,Sebastian Galeano,Carmem Bonfim,Vergilio Antonio Rensi Colturato,Marcelo C. Pasquini, Monique S Ammi,Adriana Seber, Flavia Ferreira da Costa

Transplantation and Cellular Therapy(2024)

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摘要
Introduction Since 2016, efforts have been made toward consolidating the Brazilian Hematopoietic Cell Transplant and Cellular Therapy Registry (HCT-CT/BR) for a greater awareness of the current nationwide transplant activity and its outcomes. In 2019, the HCT-CT/BR was established in collaboration with the Brazilian Society of Cellular Therapy and Bone Marrow Transplantation (SBTMO) and the CIBMTR. However, for the registry to be maintained, data managers (DM) have to be qualified, for which the transplant center (TC) nurse has a crucial role. Objectives To describe the role and importance of DMs at TCs of a developing country. Methods Cross-sectional study (July 2021). Report forms were developed using the Google platform and sent to TCs via Whatsapp to the SBTMO DM group, which includes all Brazilian TCs registered with the National Transplant System (SNT). Results 54 questionnaires from 41 TCs were answered and distributed as follows: 63% from the Southeast, 15% from the South, 12% from the Northeast, and 10% from the Center-West region of Brazil. TCs comprised 3 types of institutions: private-46%, public-34%, or both-20%. Most TCs (66%) have been active for >10 years, 22% for 5-10 years, and 12% for <5 years. As for the DMs, 66% have a single DM, 20% have 2, 12% have 3, and 2% have ≥4. Most DMs are nurses (43%) and physicians (20%). Most TCs report their data to various registries, such as the Brazilian Association of Organ Transplants (ABTO)-88%, the CIBMTR-76%, and the WBMT/LABMT, which sum up 71%. DMs are not officially recognized in Brazil, and virtually all (83%) have other professional activities. Even so, the number of TCs with DMs has increased in the past few years. TCs that have had DMs for >6 years comprise 17%, while 20% have only had their own DMs for <6 months. Most DMs have had a high level of job satisfaction (22%), 39% are moderately satisfied, and 7% are unsatisfied. Discussion The greater number of DMs in the Southeast of Brazil is in keeping with the greater proportion of TCs in this region. A deeper regulation, by the SNT, of the role of DMs in TCs seems highly welcome, since this could allow for the establishment of dedicated groups, which could improve the accuracy and the quality of the HCT data retrieved. Having dedicated professionals, with increasing experience in HCT, would likely have a positive impact on the quality of the data reported and on the level of job satisfaction. Conclusion This survey provided an overall picture of the HCT DM community in Brazil and highlighted the role of the nurse in the systematic management of the information stored in data repositories. A greater interaction of DMs with the multidisciplinary team could lead to a deeper awareness of the need for ensuring more precise patient records and to a greater accuracy of the data stored. All these factors are important for keeping the HCT-CT/BR running in the long term and, ultimately, for improving patient outcomes.
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