Training of community health agents - a strategy for earlier recognition of mucopolysaccharidoses.

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-04-01 Epub Date: 2023-12-20 DOI:10.1007/s12687-023-00691-7
Diane Bressan Pedrini, Larissa Pozzebon da Silva, Taiane Alves Vieira, Roberto Giugliani
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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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培训社区保健人员--尽早识别粘多糖病的策略。
初级卫生保健(PHC)是病人进入巴西统一卫生系统(Sistema Único de Saúde-SUS)的门户,在识别潜在的遗传病患者、转诊至专业和三级卫生服务机构方面发挥着极其重要的作用。初级保健中心由一个多学科小组组成,其中包括与社区直接接触的社区保健员。针对在巴西南里奥格兰德州(RS)多个城市工作的社区保健员实施一项教育计划。培训的重点是遗传病,尤其是黏多醣症(MPS)患者的识别。培训前后分别进行了测试,以评估参加者在这两个时间段对该主题的了解程度。这项研究在塞族共和国的 8 个城市共举办了 10 期培训班,培训了 374 名社区卫生人员。前测(n = 339)的正确答案数为 8.4(标准差 1.2),后测(n = 361)的正确答案数为 9.2(标准差 0.8)。统计分析表明,教育干预有效地向参与者提供了有关遗传病的信息。考虑到社区卫生人员对疾病的识别和预防以及更好地引导病人就医具有根本性的重要意义,这些专业人员在罕见遗传病领域发挥着关键作用,因此应采取持续的培训策略。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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