Hospitalizations of children with sickle cell disease in the Brazilian Unified Health System in the state of Minas Gerais

Fernandes, Ana Paula Pinheiro Chagas; Avendanha, Fernanda A.; Viana, Marcos Borato

doi:10.1016/j.jped.2016.07.005

Cited by 13 publications

(16 citation statements)

References 19 publications

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“…The slight predominance of the male gender was also observed in Fernandes's study and colleagues [28] , in which 52.8% of children hospitalized with SCD were of the same gender. On the other hand, some studies show higher prevalence of females [29,30], demonstrating that SCD is a genetic disease not linked to sex.…”

Section: Discussionsupporting

confidence: 71%

Health care for people with sickle cell disease in a medium-sized Brazilian city

Oliveira¹,

Pires²,

Araújo³

et al. 2020

OSJ

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The objective of the study was to evaluate the access, assistance and satisfaction of people with sickle cell disease in relation to the health care provided by the Unified Health System in the Uberlândia city, Minas Gerais, Brazil. Thirty-four people with sickle cell disease were recruited using the snowball sampling method and submitted to semi-structured interview, with collection of demographic, clinical and relationship data and satisfaction with health care. Forty-four percent were not included in the Primary Health Care network, which did not provide several procedures/actions recommended by the Ministry of Health. Ninety-four percent were unsatisfied/partially satisfied with the emergency care provided in the Integrated Care Units. The main reasons for this unsatisfied were ignorance of sickle cell disease by the health team (87.5%), delay in care (81.3%) and inadequate conduct by the health team (59.5%). In conclusion, the access and quality of care provided to people with sickle cell disease by the Primary Health Care network and the Urgency and Emergency Network need to be improved and this improvement is directly related to the training of health teams.

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Section: Discussionsupporting

confidence: 71%

Health care for people with sickle cell disease in a medium-sized Brazilian city

Oliveira¹,

Pires²,

Araújo³

et al. 2020

OSJ

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“…SCD is a public health problem in Brazil, due to the large number of affected individuals. 15,16 Despite the association between SCD and African ancestry, extensive admixture has been shown in patients with SCD. 17 Consequently, more studies about the genetic profiles of these patients are necessary to understand the influence of the genetic diversity of this population on the likelihood of identifying an HLA-matched donor and on the outcomes of HSCT.…”

mentioning

confidence: 99%

Human leukocyte antigen distribution and genomic ancestry in Brazilian patients with sickle cell disease

Silva-Malta

Rodrigues

Zuccherato

et al. 2017

HLA

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Hematopoietic stem-cell transplantation (HSCT) is currently the only established curative treatment for sickle cell disease (SCD), but is limited by donor availability. Ethnicity is thought to have an impact on the complications experienced by patients that undergo HSCT and on the likelihood of identifying an human leukocyte antigen (HLA) matched donor. In the present study, we investigated the genomic ancestry and the distribution of HLA allele groups in Brazilian patients with SCD, compared these HLA profiles to worldwide populations and evaluate the availability of HLA-matched donors. A broad intercontinental admixture of patients with SCD was observed, with African ancestry ranging from 6.7% to 93.4%. In a dendrogram based on HLA frequencies, Brazilian patients with SCD were included in a branch containing only populations with a significant African component. Among the 126 patients evaluated, 10 (8%) found a HLA-matched unrelated donor in a database of 18 134 donors. Self-reported white, brown and black matched donors were identified, and no significant difference in the percentage of compatible donors was observed between these ethnic groups. Our results show that Brazilian patients with SCD are very admixed, indicating that this group is a promising target for admixture mapping of genes involved in complications after HSCT. Additional studies may help to clarify the impact of the genetic diversity and admixture of these patients on the donor availability.

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“…A corresponsabilização, frente ao cuidado e ao tratamento para o resto da vida, emerge como desafios a serem vencidos (11) . Assim, ratificamos que as participantes do estudo demonstraram desconhecimento da rede de atenção à saúde da criança com DF, às políticas ministeriais, bem como às repercussões da doença para a vida da criança.…”

Section: Discussionunclassified

“…Outro estudo (11) , também, apontou a necessidade de capacitar a equipe multiprofissional e incluir a informação da doença nas fichas do sistema da atenção primária, ampliando e qualificando as portas de entrada dos serviços para esse atendimento. Além de incluir a doença nos parâmetros da regulação e classificação de risco, instituindo, no âmbito do SUS, a linha de cuidado integral à pessoa com DF (11) . Salienta-se, ainda, a necessidade de priorizar a terapêutica da prevenção e diagnóstico precoce de complicações, ações que podem ajudar na redução do número de hospitalizações e na diminuição das possíveis sequelas da doença.…”

Section: Discussionunclassified

“…Assim, desvelar o contexto de assistência à saúde das crianças quilombolas com DF, visando promover a equidade em saúde, é um dos grandes desafios dos profissionais que atuam em prol da saúde da criança no Brasil, pois os serviços de atenção primária à saúde apresentam falha no processo assistencial e submetem essas crianças a um processo de peregrinação, por instituições de saúde, que se inicia na atenção Cienc Cuid Saude 2019 Abr-Jun 18(2) e45177 básica a qual não se mostra efetiva na prestação de assistência e tem continuidade em outras localidades, em que o acesso aos serviços de saúde é difícil. Tais fatos evidenciam as iniquidades em saúde vivenciadas pelos quilombolas quando necessitam de assistência (4)(5) .…”

Section: Introductionunclassified

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<b> Itinerário terapêutico de crianças quilombolas com doença falciforme/ Therapeutical itinerary of quilombola children with falciform disease

Martins¹,

Silva²,

Santos³

et al. 2019

Cienc. Cuid. Saúde

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Objetivo. Descrever o itinerário terapêutico de crianças quilombolas com doença falciforme. Método. Trata-se de um estudo descritivo-exploratório com abordagem qualitativa, realizado na comunidade quilombola de Praia Grande, na Ilha de Maré – BA, com mães de crianças quilombolas com doença falciforme, no período de julho a setembro de 2018. Como instrumento de coleta de informações, foram utilizados a entrevista semi-estruturada e ecomapa. A análise dos dados foi baseada no modelo interativo de análise de conteúdo de Miles e Hubermans. Resultados. Evidenciaram peregrinação das mães em busca de atendimento das crianças; a ausência de estrutura da rede assistencial, bem como a repercussão dessa doença na vida de mães, crianças e famílias. Considerações Finais. O itinerário terapêutico das crianças quilombolas com doença falciforme permeia por uma realidade de iniquidade e inadequação da rede de atenção à saúde da criança e um despreparo por parte dos profissionais de saúde para o cuidado. Evidencia-se a necessidade de articulação da rede e da capacitação profissional, tendo em vista a magnitude da doença falciforme.

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Hospitalizations of children with sickle cell disease in the Brazilian Unified Health System in the state of Minas Gerais

Cited by 13 publications

References 19 publications

Health care for people with sickle cell disease in a medium-sized Brazilian city

Health care for people with sickle cell disease in a medium-sized Brazilian city

Human leukocyte antigen distribution and genomic ancestry in Brazilian patients with sickle cell disease

<b> Itinerário terapêutico de crianças quilombolas com doença falciforme/ Therapeutical itinerary of quilombola children with falciform disease

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