Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos

Detalhes bibliográficos
Ano de defesa: 2023
Autor(a) principal: Elisângela Maria Soares
Orientador(a): Não Informado pela instituição
Banca de defesa: Não Informado pela instituição
Tipo de documento: Dissertação
Tipo de acesso: Acesso aberto
Idioma: por
Instituição de defesa: Universidade Federal de Minas Gerais
Programa de Pós-Graduação: Não Informado pela instituição
Departamento: Não Informado pela instituição
País: Não Informado pela instituição
Palavras-chave em Português:
Link de acesso: https://hdl.handle.net/1843/78139
Resumo: This study represents a first attempt at an epidemiological analysis of the context of adults with Spina Bifida in Brazil. With the improvement of surgical techniques, early correction of spinal cord malformation, use of a ventriculoperitoneal shunt valve and better monitoring of bladder dysfunction, there was a reduction in the morbidity and mortality rate in this population. However, knowledge about the health status and adult health outcomes of people with Spina Bifida is limited. The objective of this study was to analyze the sociodemographic, clinical and rehabilitation profile of Brazilian adults with Spina Bifida, in addition to associating these variables with work. This is an observational, descriptive study with a cross-sectional design, for which a database was built with people monitored in the SARAH Network of Rehabilitation Hospitals. People with Spina Bifida over 18 years of age were evaluated. Data collection occurred with 1673 people through analysis of electronic medical records. Frequency tables were used for the analysis of qualitative variables, and the Shapiro Wilk, Mann Whitney and Chi Square tests were used for other variables. All analyzes were carried out using IBM SPSS version 25 software with a significance level of 5%. The results showed that the majority are women (51.6%), the median age was 25 years old, 46.2% come from the southeast region, 49.1% have secondary education, 91.3% of people are single, with a low percentage of children (6.3%), but women have more children than men (87.4%), there is a small proportion of people in the job market (26.6%). Regarding the clinical and rehabilitation characterization of the participants, the main malformation was myelomeningocele (89.3%), the main affected site was the lumbar/lumbosacral region (67.2%), the vast majority had hydrocephalus (75 .5%), neurogenic bladder and intestine 99.2 and 97.5%, respectively; pressure injuries were identified in most cases (52.1%); pain was representative in this segment of the population (33.9%); participants reported community ambulation (46.6%) and independent ambulation for activities of daily living (70.8%). Regarding the work variable, with sociodemographic, clinical and rehabilitation characteristics, an association was identified between sex, age, education level, marital status, presence of children, diagnosis of Spina Bifida Occulta, location of the malformation, hydrocephalus and locomotion. The results indicate that rehabilitation aimed at the transition from childhood to adulthood must consider the variables studied in this research, aiming at the autonomy and participation of Brazilian adults with Spina Bifida in society.
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spelling 2024-11-21T11:55:04Z2025-09-08T23:13:47Z2024-11-21T11:55:04Z2023-10-11https://hdl.handle.net/1843/78139This study represents a first attempt at an epidemiological analysis of the context of adults with Spina Bifida in Brazil. With the improvement of surgical techniques, early correction of spinal cord malformation, use of a ventriculoperitoneal shunt valve and better monitoring of bladder dysfunction, there was a reduction in the morbidity and mortality rate in this population. However, knowledge about the health status and adult health outcomes of people with Spina Bifida is limited. The objective of this study was to analyze the sociodemographic, clinical and rehabilitation profile of Brazilian adults with Spina Bifida, in addition to associating these variables with work. This is an observational, descriptive study with a cross-sectional design, for which a database was built with people monitored in the SARAH Network of Rehabilitation Hospitals. People with Spina Bifida over 18 years of age were evaluated. Data collection occurred with 1673 people through analysis of electronic medical records. Frequency tables were used for the analysis of qualitative variables, and the Shapiro Wilk, Mann Whitney and Chi Square tests were used for other variables. All analyzes were carried out using IBM SPSS version 25 software with a significance level of 5%. The results showed that the majority are women (51.6%), the median age was 25 years old, 46.2% come from the southeast region, 49.1% have secondary education, 91.3% of people are single, with a low percentage of children (6.3%), but women have more children than men (87.4%), there is a small proportion of people in the job market (26.6%). Regarding the clinical and rehabilitation characterization of the participants, the main malformation was myelomeningocele (89.3%), the main affected site was the lumbar/lumbosacral region (67.2%), the vast majority had hydrocephalus (75 .5%), neurogenic bladder and intestine 99.2 and 97.5%, respectively; pressure injuries were identified in most cases (52.1%); pain was representative in this segment of the population (33.9%); participants reported community ambulation (46.6%) and independent ambulation for activities of daily living (70.8%). Regarding the work variable, with sociodemographic, clinical and rehabilitation characteristics, an association was identified between sex, age, education level, marital status, presence of children, diagnosis of Spina Bifida Occulta, location of the malformation, hydrocephalus and locomotion. The results indicate that rehabilitation aimed at the transition from childhood to adulthood must consider the variables studied in this research, aiming at the autonomy and participation of Brazilian adults with Spina Bifida in society.porUniversidade Federal de Minas GeraisEspinha BífidaReabilitaçãoMielomeningoceleAdultoEnfermagem de ReabilitaçãoDisrafismo EspinalReabilitaçãoEnfermagemAdultoPerfil de SaúdeEspinha Bífida: perfil sociodemográfico e clínico de brasileiros adultosSPINA BIFIDA: sociodemographic and clinical profile of Brazilian adultsinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisElisângela Maria Soaresinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFMGinstname:Universidade Federal de Minas Gerais (UFMG)instacron:UFMGhttp://lattes.cnpq.br/8975735899088044Isabel Yovana Quispe Mendozahttp://lattes.cnpq.br/7353902438583569Fabiana Faleiros Castrohttp://lattes.cnpq.br/8991651738080247Este estudo representa uma análise epidemiológica sobre o contexto de adultos com Espinha Bífida no Brasil. Com a melhoria das técnicas cirúrgicas, correção precoce da malformação da medula espinhal, uso de válvula de derivação ventrículo peritoneal e melhor acompanhamento da disfunção vesical, ocorreu redução da taxa de morbimortalidade nesta população. No entanto, o conhecimento sobre o estado de saúde e os resultados de saúde na fase adulta das pessoas com Espinha Bífida é limitado. O objetivo deste estudo, foi analisar o perfil sociodemográfico, clínico e de reabilitação de brasileiros adultos com Espinha Bífida, além de associar essas variáveis com trabalho. Trata-se de estudo observacional, do tipo descritivo com delineamento transversal, para o qual foi construído um banco de dados com pessoas acompanhadas na Rede SARAH de Hospitais de Reabilitação. Foram avaliadas pessoas com Espinha Bífida maiores de 18 anos. A coleta de dados ocorreu com 1673 pessoas por meio da análise em prontuário eletrônico. Foram utilizadas para a análise das variáveis qualitativas tabelas de frequência, para demais variáveis teste de Shapiro Wilk, Mann Whitney e Qui Quadrado. Todas as análises foram feitas no software IBM SPSS versão 25 com nível de significância de 5%. Os resultados mostraram que a maioria são mulheres (51,6%), a mediana de idade foi 25 anos, 46,2% procedentes da região sudeste, 49,1% com instrução de nível médio, 91,3% das pessoas são solteiras, com baixa porcentagem de filhos (6,3%), porém as mulheres possuem mais filhos que os homens (87,4%), há uma pequena proporção de pessoas inseridas no mercado de trabalho (26,6%). No que diz respeito à caracterização clínica e de reabilitação dos participantes, a principal malformação foi a mielomeningocele (89,3%), o principal local acometido foi a região lombar/lombossacra (67,2%), a grande maioria apresenta hidrocefalia (75,5%), bexiga e intestino neurogênicos 99,2 e 97,5%, respectivamente; lesão por pressão foi identificada na maior parte (52,1%); a dor foi representativa nessa camada da população (33,9%); os participantes relataram deambulação comunitária (46,6%) e independentes para as atividades da vida diária (70,8%). Quanto à variável trabalho, com as características sociodemográficas, clínicas e de reabilitação, foi identificado associação entre sexo, idade, nível de escolaridade, estado civil, presença de filhos, diagnóstico de Espinha Bífida Oculta, local da malformação, hidrocefalia e locomoção. Os resultados indicam que a reabilitação visando a transição da infância para a idade adulta deve considerar as variáveis estudadas nesta pesquisa, visando a autonomia e a participação dos brasileiros adultos com Espinha Bífida na sociedade.BrasilENFERMAGEM - ESCOLA DE ENFERMAGEMPrograma de Pós-Graduação em EnfermagemUFMGORIGINALDISSERTAÇÃO ELISÂNGELA 2907.pdfapplication/pdf3518920https://repositorio.ufmg.br//bitstreams/e2179977-46a9-4aa3-8bc5-9d0577a2a928/download7554ea5756a3435deb5a23e3f312baf6MD52trueAnonymousREADLICENSElicense.txttext/plain2118https://repositorio.ufmg.br//bitstreams/f1345388-ee29-46f8-90ac-ec452cbd34b4/downloadcda590c95a0b51b4d15f60c9642ca272MD51falseAnonymousREAD1843/781392025-09-08 20:13:47.477open.accessoai:repositorio.ufmg.br:1843/78139https://repositorio.ufmg.br/Repositório InstitucionalPUBhttps://repositorio.ufmg.br/oairepositorio@ufmg.bropendoar:2025-09-08T23:13:47Repositório Institucional da UFMG - Universidade Federal de Minas Gerais (UFMG)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
dc.title.none.fl_str_mv Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
dc.title.alternative.none.fl_str_mv SPINA BIFIDA: sociodemographic and clinical profile of Brazilian adults
title Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
spellingShingle Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
Elisângela Maria Soares
Disrafismo Espinal
Reabilitação
Enfermagem
Adulto
Perfil de Saúde
Espinha Bífida
Reabilitação
Mielomeningocele
Adulto
Enfermagem de Reabilitação
title_short Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
title_full Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
title_fullStr Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
title_full_unstemmed Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
title_sort Espinha Bífida: perfil sociodemográfico e clínico de brasileiros adultos
author Elisângela Maria Soares
author_facet Elisângela Maria Soares
author_role author
dc.contributor.author.fl_str_mv Elisângela Maria Soares
dc.subject.por.fl_str_mv Disrafismo Espinal
Reabilitação
Enfermagem
Adulto
Perfil de Saúde
topic Disrafismo Espinal
Reabilitação
Enfermagem
Adulto
Perfil de Saúde
Espinha Bífida
Reabilitação
Mielomeningocele
Adulto
Enfermagem de Reabilitação
dc.subject.other.none.fl_str_mv Espinha Bífida
Reabilitação
Mielomeningocele
Adulto
Enfermagem de Reabilitação
description This study represents a first attempt at an epidemiological analysis of the context of adults with Spina Bifida in Brazil. With the improvement of surgical techniques, early correction of spinal cord malformation, use of a ventriculoperitoneal shunt valve and better monitoring of bladder dysfunction, there was a reduction in the morbidity and mortality rate in this population. However, knowledge about the health status and adult health outcomes of people with Spina Bifida is limited. The objective of this study was to analyze the sociodemographic, clinical and rehabilitation profile of Brazilian adults with Spina Bifida, in addition to associating these variables with work. This is an observational, descriptive study with a cross-sectional design, for which a database was built with people monitored in the SARAH Network of Rehabilitation Hospitals. People with Spina Bifida over 18 years of age were evaluated. Data collection occurred with 1673 people through analysis of electronic medical records. Frequency tables were used for the analysis of qualitative variables, and the Shapiro Wilk, Mann Whitney and Chi Square tests were used for other variables. All analyzes were carried out using IBM SPSS version 25 software with a significance level of 5%. The results showed that the majority are women (51.6%), the median age was 25 years old, 46.2% come from the southeast region, 49.1% have secondary education, 91.3% of people are single, with a low percentage of children (6.3%), but women have more children than men (87.4%), there is a small proportion of people in the job market (26.6%). Regarding the clinical and rehabilitation characterization of the participants, the main malformation was myelomeningocele (89.3%), the main affected site was the lumbar/lumbosacral region (67.2%), the vast majority had hydrocephalus (75 .5%), neurogenic bladder and intestine 99.2 and 97.5%, respectively; pressure injuries were identified in most cases (52.1%); pain was representative in this segment of the population (33.9%); participants reported community ambulation (46.6%) and independent ambulation for activities of daily living (70.8%). Regarding the work variable, with sociodemographic, clinical and rehabilitation characteristics, an association was identified between sex, age, education level, marital status, presence of children, diagnosis of Spina Bifida Occulta, location of the malformation, hydrocephalus and locomotion. The results indicate that rehabilitation aimed at the transition from childhood to adulthood must consider the variables studied in this research, aiming at the autonomy and participation of Brazilian adults with Spina Bifida in society.
publishDate 2023
dc.date.issued.fl_str_mv 2023-10-11
dc.date.accessioned.fl_str_mv 2024-11-21T11:55:04Z
2025-09-08T23:13:47Z
dc.date.available.fl_str_mv 2024-11-21T11:55:04Z
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dc.identifier.uri.fl_str_mv https://hdl.handle.net/1843/78139
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dc.publisher.none.fl_str_mv Universidade Federal de Minas Gerais
publisher.none.fl_str_mv Universidade Federal de Minas Gerais
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