Abstract
Primary Health Care (PHC) is the gateway for patients in the Brazilian unified health system (Sistema Único de Saúde—SUS), playing an extremely important role in the identification of potential patients with genetic diseases, and referral to specialized and tertiary health services. The PHC is composed of a multidisciplinary team, including the Community Health Agent, who is in direct contact with the community. To implement an educational program aimed at community health agents working in several municipalities in the state of Rio Grande do Sul (RS), Brazil. The training was focused on genetic diseases in general, with a special focus on identifying patients with Mucopolysaccharidosis (MPS). Tests were applied before and after the educational intervention, in order to assess the participants’ knowledge on the topic at these two moments. The study covered a total of ten training sessions carried out in eight municipalities in the RS state, training 374 community health agents. The number of correct answers in the pre-test (n = 339) was 8,4 (SD 1.2), while in the post-test (n = 361) it was 9,2 (SD 0.8). Statistical analysis showed that the educational intervention effectively provided information about genetic diseases to the participants. Considering that community health agents are of fundamental importance in the identification and prevention of diseases and in the better navigation of the patients on the SUS, these professionals play a key role in the field of rare genetic diseases, and continuous training strategies should be taken.
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The authors thank the “Genetics for All Institute” (Instituto Genética Para Todos) for the support.
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Diane Bressan Pedrini — Carried out some lectures of the training. Collect data from pre and post-tests and build the database. Wrote the manuscript with the support of all authors.
Larissa Pozzebon da Silva — Carried out some lectures of the training. Contributed to the design and implementation of the research, to the analysis of the results, and to the writing of the manuscript.
Taiane Alves Vieira — Carried out some lectures of the training. Contributed to conceiving the presented idea and helped supervise the project. Contributed to the analysis of the results, and to the writing of the manuscript.
Roberto Giugliani — Conceived the presented idea and supervised the findings of this work. Contributed to discuss the results and reviewed the final version of the manuscript.
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Pedrini, D.B., da Silva, L.P., Vieira, T.A. et al. Training of community health agents — a strategy for earlier recognition of mucopolysaccharidoses. J Community Genet 15, 129–135 (2024). https://doi.org/10.1007/s12687-023-00691-7
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DOI: https://doi.org/10.1007/s12687-023-00691-7