Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , , , , , , |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Research, Society and Development |
Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/35661 |
Resumo: | Hemophilias are bleeding diseases determined by the deficiency of coagulation factor VIII (hemophilia A) or factor IX (hemophilia B). This study aimed to analyze the impact of hemophilia on the school, work, and leisure activities of patients seen at the Hemocentro Regional de Montes Claros/MG. This is a cross-sectional, descriptive, quanti-qualitative study, based on interviews and data from medical records. The data were submitted for statistical analysis. Participated in the research 22/43 male subjects, over 18 years old, with hemophilia. Age ranged from 20 to 54 years. The majority (10/22) presented the moderate form and 4/22 the severe form. One participant had a high-titer inhibitor. There was a prevalence of incomplete high school education (5/22), paid activity (12/22), and retired (8/22). The reported income was 1 minimum wage for 40.9%. The main complications recorded were hemarthrosis (17/22), mainly in the knees and elbows. In the group, 40.9% perform regular physical activity and the most frequent leisure activities were watching movies, TV, computer, and online games. Most were single (68.2%) and those who had children corresponded to 36.4%. Discussion: Hemorrhagic events in hemophilia worsen the quality of life. In this study, 36.4% participate in the secondary/ tertiary prophylaxis program with factor VIII or IX. Early initiation of primary prophylaxis (Ministry of Health, 2015) and patient compliance, allow promising results, particularly in reducing degenerative arthropathies, often disabling (Bezerra, 2022). It is concluded that hemophilia interferes with school, work, and leisure activities, and prophylaxis programs, DDU, and access to multiprofessional care are determinants for a better quality of life for these patients. |
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Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais Impacto de la hemofilia en las actividades escolares, laborales y de ocio de los pacientes atendidos en el Hemocentro Regional de Montes Claros/Minas Gerais Impacto da hemofilia nas atividades escolares, laborais e de lazer de pacientes atendidos no Hemocentro Regional de Montes Claros/Minas GeraisHemophiliaProphylaxisQuality of life.HemofiliaProfilaxisCalidad de vida.HemofiliaProfiilaxiaQualidade de vida.Hemophilias are bleeding diseases determined by the deficiency of coagulation factor VIII (hemophilia A) or factor IX (hemophilia B). This study aimed to analyze the impact of hemophilia on the school, work, and leisure activities of patients seen at the Hemocentro Regional de Montes Claros/MG. This is a cross-sectional, descriptive, quanti-qualitative study, based on interviews and data from medical records. The data were submitted for statistical analysis. Participated in the research 22/43 male subjects, over 18 years old, with hemophilia. Age ranged from 20 to 54 years. The majority (10/22) presented the moderate form and 4/22 the severe form. One participant had a high-titer inhibitor. There was a prevalence of incomplete high school education (5/22), paid activity (12/22), and retired (8/22). The reported income was 1 minimum wage for 40.9%. The main complications recorded were hemarthrosis (17/22), mainly in the knees and elbows. In the group, 40.9% perform regular physical activity and the most frequent leisure activities were watching movies, TV, computer, and online games. Most were single (68.2%) and those who had children corresponded to 36.4%. Discussion: Hemorrhagic events in hemophilia worsen the quality of life. In this study, 36.4% participate in the secondary/ tertiary prophylaxis program with factor VIII or IX. Early initiation of primary prophylaxis (Ministry of Health, 2015) and patient compliance, allow promising results, particularly in reducing degenerative arthropathies, often disabling (Bezerra, 2022). It is concluded that hemophilia interferes with school, work, and leisure activities, and prophylaxis programs, DDU, and access to multiprofessional care are determinants for a better quality of life for these patients.Las hemofilias son enfermedades hemorrágicas determinadas por la deficiencia del factor de coagulación VIII (hemofilia A) o del factor IX (hemofilia B). Este estudio tuvo como objetivo analizar el impacto de la hemofilia en las actividades escolares, laborales y de ocio de los pacientes atendidos en el Hemocentro Regional de Montes Claros/MG. Se trata de un estudio transversal, descriptivo, cuanti-cualitativo realizado a partir de entrevistas y datos de prontuarios. Los datos se sometieron a un análisis estadístico. Participaron en la investigación 22/43 individuos varones, mayores de 18 años, con hemofilia. La edad oscilaba entre los 20 y los 54 años. La mayoría (10/22) presentaban la forma moderada y 4/22 la forma grave. Un participante tenía un título alto de inhibidor. Predominan los estudios secundarios incompletos (5/22), la actividad remunerada (12/22) y la jubilación (8/22). Los ingresos declarados fueron de 1 salario mínimo para el 40,9%. La principal complicación registrada fue la hemartrosis (17/22), principalmente en rodillas y codos. En el grupo, el 40,9% realiza una actividad física regular y las actividades de ocio más frecuentes eran ver películas, la televisión, el ordenador y los juegos en línea. La mayoría eran solteros (68,2%) y los que tenían hijos correspondían al 36,4%. Discusión: Los eventos hemorrágicos en la hemofilia empeoran la calidad de vida. En este estudio, el 36,4% participó en el programa de profilaxis secundaria/terciaria con factor VIII o IX. El inicio temprano de la profilaxis primaria (Ministerio de Salud, 2015) y el cumplimiento por parte de los pacientes, permite obtener resultados prometedores, sobre todo reduciendo las artropatías degenerativas, a menudo incapacitantes (Bezerra, 2022). Concluimos que la hemofilia interfiere en las actividades escolares, laborales y de ocio, y que los programas de profilaxis, las DDU y el acceso a la atención multidisciplinar son esenciales para una mejor calidad de vida de estos pacientes.As hemofilias são doenças hemorrágicas determinadas pela deficiência de fator VIII (hemofilia A) ou fator IX (hemofilia B) da coagulação. Foi objetivo de esse estudo analisar o impacto da hemofilia nas atividades escolares, laborais e de lazer de pacientes atendidos no Hemocentro Regional de Montes Claros/MG. Trata-se de estudo transversal, descritivo, quanti- qualitativo realizado a partir de entrevista e dados de prontuários. Os dados foram submetidos à análise estatística. Participaram da pesquisa 22/43 indivíduos masculinos, maiores de 18 anos, com hemofilia. A faixa etária variou de 20 a 54 anos. A maioria (10/22) apresenta a forma moderada e 4/22 grave. Um participante apresentava inibidor de alto título. Prevaleceu à escolaridade de segundo grau incompleto (5/22), atividade remunerada (12/22), aposentados (8/22). A renda informada foi de um salário mínimo para 40,9%. A principal intercorrência registrada foram hemartroses (17/22), principalmente de joelhos e cotovelos. No grupo 40,9% realizam atividade física regular e as atividades de lazer mais citadas foram assistir filmes, TV, computador e jogos on line. A maioria se declara solteiro (68,2%) e os que têm filhos correspondem a 36,4%. Discussão: As intercorrências hemorrágicas na hemofilia pioram a qualidade de vida. Nesse estudo, 36,4% participam do programa de profilaxia secundária/ terciária com fator VIII ou IX. O início precoce de profilaxia primária (Ministério da Saúde, 2015) e a adesão dos pacientes, permitem resultados promissores, reduzindo particularmente as artropatias degenerativas, muitas vezes incapacitantes (Bezerra, 2022). Conclui-se que a hemofilia interfere nas atividades escolares, laborais e de lazer, sendo os programas de profilaxia, DDU e acesso a atendimento multiprofissional determinante para a melhor qualidade de vida desses pacientes.Research, Society and Development2022-10-11info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/3566110.33448/rsd-v11i13.35661Research, Society and Development; Vol. 11 No. 13; e360111335661Research, Society and Development; Vol. 11 Núm. 13; e360111335661Research, Society and Development; v. 11 n. 13; e3601113356612525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/35661/29861Copyright (c) 2022 Arthur Macedo Goulart Silva; Alessa Assis Guimarães Silvério ; Leandro de Freitas Teles ; Larissa Caires Gonzaga ; José Wilson de Brito Sales; Tânia de Cássia Moreira Soares; Rafael Cândido Alves Aguiar; Elaine Veloso Rocha Uriashttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessSilva, Arthur Macedo Goulart Silvério , Alessa Assis Guimarães Teles , Leandro de Freitas Gonzaga , Larissa Caires Sales, José Wilson de Brito Soares, Tânia de Cássia Moreira Aguiar, Rafael Cândido Alves Urias, Elaine Veloso Rocha 2022-10-17T13:43:46Zoai:ojs.pkp.sfu.ca:article/35661Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:50:29.860900Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
dc.title.none.fl_str_mv |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais Impacto de la hemofilia en las actividades escolares, laborales y de ocio de los pacientes atendidos en el Hemocentro Regional de Montes Claros/Minas Gerais Impacto da hemofilia nas atividades escolares, laborais e de lazer de pacientes atendidos no Hemocentro Regional de Montes Claros/Minas Gerais |
title |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais |
spellingShingle |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais Silva, Arthur Macedo Goulart Hemophilia Prophylaxis Quality of life. Hemofilia Profilaxis Calidad de vida. Hemofilia Profiilaxia Qualidade de vida. |
title_short |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais |
title_full |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais |
title_fullStr |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais |
title_full_unstemmed |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais |
title_sort |
Impact of hemophilia on school, work, and leisure activities of patients assisted at the Hemocentro Regional de Montes Claros/Minas Gerais |
author |
Silva, Arthur Macedo Goulart |
author_facet |
Silva, Arthur Macedo Goulart Silvério , Alessa Assis Guimarães Teles , Leandro de Freitas Gonzaga , Larissa Caires Sales, José Wilson de Brito Soares, Tânia de Cássia Moreira Aguiar, Rafael Cândido Alves Urias, Elaine Veloso Rocha |
author_role |
author |
author2 |
Silvério , Alessa Assis Guimarães Teles , Leandro de Freitas Gonzaga , Larissa Caires Sales, José Wilson de Brito Soares, Tânia de Cássia Moreira Aguiar, Rafael Cândido Alves Urias, Elaine Veloso Rocha |
author2_role |
author author author author author author author |
dc.contributor.author.fl_str_mv |
Silva, Arthur Macedo Goulart Silvério , Alessa Assis Guimarães Teles , Leandro de Freitas Gonzaga , Larissa Caires Sales, José Wilson de Brito Soares, Tânia de Cássia Moreira Aguiar, Rafael Cândido Alves Urias, Elaine Veloso Rocha |
dc.subject.por.fl_str_mv |
Hemophilia Prophylaxis Quality of life. Hemofilia Profilaxis Calidad de vida. Hemofilia Profiilaxia Qualidade de vida. |
topic |
Hemophilia Prophylaxis Quality of life. Hemofilia Profilaxis Calidad de vida. Hemofilia Profiilaxia Qualidade de vida. |
description |
Hemophilias are bleeding diseases determined by the deficiency of coagulation factor VIII (hemophilia A) or factor IX (hemophilia B). This study aimed to analyze the impact of hemophilia on the school, work, and leisure activities of patients seen at the Hemocentro Regional de Montes Claros/MG. This is a cross-sectional, descriptive, quanti-qualitative study, based on interviews and data from medical records. The data were submitted for statistical analysis. Participated in the research 22/43 male subjects, over 18 years old, with hemophilia. Age ranged from 20 to 54 years. The majority (10/22) presented the moderate form and 4/22 the severe form. One participant had a high-titer inhibitor. There was a prevalence of incomplete high school education (5/22), paid activity (12/22), and retired (8/22). The reported income was 1 minimum wage for 40.9%. The main complications recorded were hemarthrosis (17/22), mainly in the knees and elbows. In the group, 40.9% perform regular physical activity and the most frequent leisure activities were watching movies, TV, computer, and online games. Most were single (68.2%) and those who had children corresponded to 36.4%. Discussion: Hemorrhagic events in hemophilia worsen the quality of life. In this study, 36.4% participate in the secondary/ tertiary prophylaxis program with factor VIII or IX. Early initiation of primary prophylaxis (Ministry of Health, 2015) and patient compliance, allow promising results, particularly in reducing degenerative arthropathies, often disabling (Bezerra, 2022). It is concluded that hemophilia interferes with school, work, and leisure activities, and prophylaxis programs, DDU, and access to multiprofessional care are determinants for a better quality of life for these patients. |
publishDate |
2022 |
dc.date.none.fl_str_mv |
2022-10-11 |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion |
format |
article |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/35661 10.33448/rsd-v11i13.35661 |
url |
https://rsdjournal.org/index.php/rsd/article/view/35661 |
identifier_str_mv |
10.33448/rsd-v11i13.35661 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/35661/29861 |
dc.rights.driver.fl_str_mv |
https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
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https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Research, Society and Development |
publisher.none.fl_str_mv |
Research, Society and Development |
dc.source.none.fl_str_mv |
Research, Society and Development; Vol. 11 No. 13; e360111335661 Research, Society and Development; Vol. 11 Núm. 13; e360111335661 Research, Society and Development; v. 11 n. 13; e360111335661 2525-3409 reponame:Research, Society and Development instname:Universidade Federal de Itajubá (UNIFEI) instacron:UNIFEI |
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Universidade Federal de Itajubá (UNIFEI) |
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UNIFEI |
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UNIFEI |
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Research, Society and Development |
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Research, Society and Development |
repository.name.fl_str_mv |
Research, Society and Development - Universidade Federal de Itajubá (UNIFEI) |
repository.mail.fl_str_mv |
rsd.articles@gmail.com |
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1797052822248751104 |