Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida
Autor(a) principal: | |
---|---|
Data de Publicação: | 2019 |
Tipo de documento: | Dissertação |
Idioma: | por |
Título da fonte: | Biblioteca Digital de Teses e Dissertações da UFMA |
Texto Completo: | https://tedebc.ufma.br/jspui/handle/tede/tede/2826 |
Resumo: | Sickle cell disease (SCD) is a genetic disorder characterized by a type of hemoglobin mutant called hemoglobin S (or HbS), which causes distortion on red blood cells, leading them to take the form of a sickle or “half-moon". The clinical events of this disease are: chronic anemia, painful crises, recurrent infections, stroke, jaundice, ocular complications, gallstones, among other ones. These complications interfere with the quality of life (QoL) of these patients at an early stage when symptoms begin. The State of Maranhão has high SCD prevalence and Public Policies need to be adopted and continuously revised for the management of these patients. The objective of this study is to evaluate the QoL in individuals with SCD. For this purpose, a generic QoL questionnaire - called SF-36 - was applied to patients attending HEMOMAR outpatient clinic (Hematology and Hemotherapy Center of Maranhão), a state reference for monitoring hemoglobinopathies. 113 sickle cell patients were interviewed and sociodemographic, disease characteristics and laboratory tests (hemogram, fetal hemoglobin, lactate dehydrogenase and reticulocytes) were collected. The SF- 36 questionnaire was then applied. From 113 patients, 62,8% were female, with an average of 26 years old, 52,7% declaring themselves to have brown skin color and 80,5% living in the country side of the State, with low-income and with low level of education. About 92% had the SS subtype, the most serious one. The percentage of neonatal diagnosis was only 27.4%. Regarding the SF-36 questionnaires, the quality of life was classified as poor in relation to the physical component and good in the mental component. The use of hydroxyurea - the only medication approved in Brazil for the control and prevention of pain crises - promoted an improvement in the physical domain of patients with SCD, however, without relation to the prevalence of clinical complications. HbF levels greater than or equal to 20% had positive effects on the mental component of patients with the disease. Having had their QoL impaired by the disease, sickle cell patients need State actions sensitive to this Public Health problem. |
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CARTÁGENES, Maria do Socorro de Sousa407888653-15http://lattes.cnpq.br/3013333572719007RODRIGUES, Thiago Alves903693783-34http://lattes.cnpq.br/3694330594230199CARTÁGENES, Maria do Socorro de Sousa407888653-15http://lattes.cnpq.br/3013333572719007RODRIGUES, Thiago Alves903693783-34http://lattes.cnpq.br/3694330594230199FRANÇA, Lilaléa Gonçalveshttp://lattes.cnpq.br/9953754145791526BEZERRA, Geusa Felipa de Barroshttp://lattes.cnpq.br/4677586369876974ANDRADE, Marcelo Souza dehttp://lattes.cnpq.br/6267637354657076567823993-68http://lattes.cnpq.br/2448793074525820RODRIGUES, Camila Freitas de Andrade2019-08-23T18:13:39Z2019-08-07RODRIGUES, Camila Freitas de Andrade. Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida. 2019. 117 f. Dissertação (Programa de Pós-Graduação em Saúde do Adulto/CCBS) - Universidade Federal do Maranhão, São Luís.https://tedebc.ufma.br/jspui/handle/tede/tede/2826Sickle cell disease (SCD) is a genetic disorder characterized by a type of hemoglobin mutant called hemoglobin S (or HbS), which causes distortion on red blood cells, leading them to take the form of a sickle or “half-moon". The clinical events of this disease are: chronic anemia, painful crises, recurrent infections, stroke, jaundice, ocular complications, gallstones, among other ones. These complications interfere with the quality of life (QoL) of these patients at an early stage when symptoms begin. The State of Maranhão has high SCD prevalence and Public Policies need to be adopted and continuously revised for the management of these patients. The objective of this study is to evaluate the QoL in individuals with SCD. For this purpose, a generic QoL questionnaire - called SF-36 - was applied to patients attending HEMOMAR outpatient clinic (Hematology and Hemotherapy Center of Maranhão), a state reference for monitoring hemoglobinopathies. 113 sickle cell patients were interviewed and sociodemographic, disease characteristics and laboratory tests (hemogram, fetal hemoglobin, lactate dehydrogenase and reticulocytes) were collected. The SF- 36 questionnaire was then applied. From 113 patients, 62,8% were female, with an average of 26 years old, 52,7% declaring themselves to have brown skin color and 80,5% living in the country side of the State, with low-income and with low level of education. About 92% had the SS subtype, the most serious one. The percentage of neonatal diagnosis was only 27.4%. Regarding the SF-36 questionnaires, the quality of life was classified as poor in relation to the physical component and good in the mental component. The use of hydroxyurea - the only medication approved in Brazil for the control and prevention of pain crises - promoted an improvement in the physical domain of patients with SCD, however, without relation to the prevalence of clinical complications. HbF levels greater than or equal to 20% had positive effects on the mental component of patients with the disease. Having had their QoL impaired by the disease, sickle cell patients need State actions sensitive to this Public Health problem.A Doença Falciforme (DF) é uma alteração genética caracterizada por um tipo de hemoglobina mutante designada por hemoglobina S (ou HbS), que provoca a distorção das hemácias, fazendo-as tomar a forma de “foice” ou “meia- lua”. Os eventos clínicos dessa doença são: anemia crônica, crises dolorosas, infecções recorrentes, acidente vascular cerebral, icterícia, complicações oculares, cálculo biliar, entre outros. Essas complicações interferem na qualidade de vida dessas pessoas precocemente, quando se iniciam os sintomas. O Estado do Maranhão possui alta prevalência de DF e Políticas Públicas precisam ser adotadas e continuamente revisadas para condução destes pacientes. O objetivo do trabalho foi avaliar a qualidade de vida em indivíduos com doença falciforme. Para isso, aplicou-se um questionário genérico de qualidade de vida, o SF-36, a pacientes que frequentam o ambulatório de hemoglobinopatias no HEMOMAR – Centro de Hematologia e Hemoterapia do Maranhão. Foram entrevistados 113 falcêmicos e colhidos dados sociodemográficos, de características da doença e exames laboratoriais (hemograma, hemoglobina fetal, DHL e reticulócitos). Em seguida, foi aplicado o questionário SF-36. Dos 113 pacientes, 62,8% era do gênero feminino, com média de idade de 26 anos;; 56,7% declarando ter cor parda;; 80,5% moravam no interior do Estado, tendo baixa renda e com baixa escolaridade. Cerca de 92% era do subtipo SS, o subtipo mais grave. A porcentagem de diagnóstico neonatal foi de somente 27,4%. Classificou-se como ruim a qualidade de vida no que diz respeito ao componente físico e boa quanto ao componente mental. O uso de hidroxiureia, única medicação aprovada no Brasil para o controle e prevenção das crises de dor, promoveu melhora no aspecto físico dos portadores de DF, entretanto, sem ter relação com prevalência de complicações clínicas. Os níveis de HbF maiores ou iguais a 20% tiveram efeitos positivos no componente mental dos portadores da doença. Tendo sua qualidade de vida prejudicada pela doença, os pacientes falcêmicos necessitam de ações contundentes e significativas do Estado em relação a este problema de Saúde Pública.Submitted by Sheila MONTEIRO (sheila.monteiro@ufma.br) on 2019-08-23T18:13:39Z No. of bitstreams: 1 CAMILA-RODRIGUES.pdf: 2991884 bytes, checksum: 92ebe1f96ca54f969831929aa12d0fb2 (MD5)Made available in DSpace on 2019-08-23T18:13:39Z (GMT). No. of bitstreams: 1 CAMILA-RODRIGUES.pdf: 2991884 bytes, checksum: 92ebe1f96ca54f969831929aa12d0fb2 (MD5) Previous issue date: 2019-08-07application/pdfporUniversidade Federal do MaranhãoPROGRAMA DE PÓS-GRADUAÇÃO EM SAÚDE DO ADULTO E DA CRIANÇA/CCBSUFMABrasilDEPARTAMENTO DE CIÊNCIAS FISIOLÓGICAS/CCBSDoença falciformeQualidade de vidaSF-36HidroxiureiaSickle cell diseaseQuality of lifeSF-36HydroxyureaCiências da SaúdeHematologiaAspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vidaPhysical and mental aspects of patients with sickle cell disease: a study on quality of lifeinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisinfo:eu-repo/semantics/openAccessreponame:Biblioteca Digital de Teses e Dissertações da UFMAinstname:Universidade Federal do Maranhão (UFMA)instacron:UFMAORIGINALCAMILA-RODRIGUES.pdfCAMILA-RODRIGUES.pdfapplication/pdf2991884http://tedebc.ufma.br:8080/bitstream/tede/2826/2/CAMILA-RODRIGUES.pdf92ebe1f96ca54f969831929aa12d0fb2MD52LICENSElicense.txtlicense.txttext/plain; charset=utf-82279http://tedebc.ufma.br:8080/bitstream/tede/2826/1/license.txtd68b332aa99e49346de9044af0b25bacMD51tede/28262019-08-23 15:13:39.158oai:tede2:tede/2826Biblioteca Digital de Teses e Dissertaçõeshttps://tedebc.ufma.br/jspui/PUBhttp://tedebc.ufma.br:8080/oai/requestrepositorio@ufma.br||repositorio@ufma.bropendoar:21312019-08-23T18:13:39Biblioteca Digital de Teses e Dissertações da UFMA - Universidade Federal do Maranhão (UFMA)false |
dc.title.por.fl_str_mv |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
dc.title.alternative.eng.fl_str_mv |
Physical and mental aspects of patients with sickle cell disease: a study on quality of life |
title |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
spellingShingle |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida RODRIGUES, Camila Freitas de Andrade Doença falciforme Qualidade de vida SF-36 Hidroxiureia Sickle cell disease Quality of life SF-36 Hydroxyurea Ciências da Saúde Hematologia |
title_short |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
title_full |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
title_fullStr |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
title_full_unstemmed |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
title_sort |
Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida |
author |
RODRIGUES, Camila Freitas de Andrade |
author_facet |
RODRIGUES, Camila Freitas de Andrade |
author_role |
author |
dc.contributor.advisor1.fl_str_mv |
CARTÁGENES, Maria do Socorro de Sousa |
dc.contributor.advisor1ID.fl_str_mv |
407888653-15 |
dc.contributor.advisor1Lattes.fl_str_mv |
http://lattes.cnpq.br/3013333572719007 |
dc.contributor.advisor-co1.fl_str_mv |
RODRIGUES, Thiago Alves |
dc.contributor.advisor-co1ID.fl_str_mv |
903693783-34 |
dc.contributor.advisor-co1Lattes.fl_str_mv |
http://lattes.cnpq.br/3694330594230199 |
dc.contributor.referee1.fl_str_mv |
CARTÁGENES, Maria do Socorro de Sousa |
dc.contributor.referee1ID.fl_str_mv |
407888653-15 |
dc.contributor.referee1Lattes.fl_str_mv |
http://lattes.cnpq.br/3013333572719007 |
dc.contributor.referee2.fl_str_mv |
RODRIGUES, Thiago Alves |
dc.contributor.referee2ID.fl_str_mv |
903693783-34 |
dc.contributor.referee2Lattes.fl_str_mv |
http://lattes.cnpq.br/3694330594230199 |
dc.contributor.referee3.fl_str_mv |
FRANÇA, Lilaléa Gonçalves |
dc.contributor.referee3Lattes.fl_str_mv |
http://lattes.cnpq.br/9953754145791526 |
dc.contributor.referee4.fl_str_mv |
BEZERRA, Geusa Felipa de Barros |
dc.contributor.referee4Lattes.fl_str_mv |
http://lattes.cnpq.br/4677586369876974 |
dc.contributor.referee5.fl_str_mv |
ANDRADE, Marcelo Souza de |
dc.contributor.referee5Lattes.fl_str_mv |
http://lattes.cnpq.br/6267637354657076 |
dc.contributor.authorID.fl_str_mv |
567823993-68 |
dc.contributor.authorLattes.fl_str_mv |
http://lattes.cnpq.br/2448793074525820 |
dc.contributor.author.fl_str_mv |
RODRIGUES, Camila Freitas de Andrade |
contributor_str_mv |
CARTÁGENES, Maria do Socorro de Sousa RODRIGUES, Thiago Alves CARTÁGENES, Maria do Socorro de Sousa RODRIGUES, Thiago Alves FRANÇA, Lilaléa Gonçalves BEZERRA, Geusa Felipa de Barros ANDRADE, Marcelo Souza de |
dc.subject.por.fl_str_mv |
Doença falciforme Qualidade de vida SF-36 Hidroxiureia |
topic |
Doença falciforme Qualidade de vida SF-36 Hidroxiureia Sickle cell disease Quality of life SF-36 Hydroxyurea Ciências da Saúde Hematologia |
dc.subject.eng.fl_str_mv |
Sickle cell disease Quality of life SF-36 Hydroxyurea |
dc.subject.cnpq.fl_str_mv |
Ciências da Saúde Hematologia |
description |
Sickle cell disease (SCD) is a genetic disorder characterized by a type of hemoglobin mutant called hemoglobin S (or HbS), which causes distortion on red blood cells, leading them to take the form of a sickle or “half-moon". The clinical events of this disease are: chronic anemia, painful crises, recurrent infections, stroke, jaundice, ocular complications, gallstones, among other ones. These complications interfere with the quality of life (QoL) of these patients at an early stage when symptoms begin. The State of Maranhão has high SCD prevalence and Public Policies need to be adopted and continuously revised for the management of these patients. The objective of this study is to evaluate the QoL in individuals with SCD. For this purpose, a generic QoL questionnaire - called SF-36 - was applied to patients attending HEMOMAR outpatient clinic (Hematology and Hemotherapy Center of Maranhão), a state reference for monitoring hemoglobinopathies. 113 sickle cell patients were interviewed and sociodemographic, disease characteristics and laboratory tests (hemogram, fetal hemoglobin, lactate dehydrogenase and reticulocytes) were collected. The SF- 36 questionnaire was then applied. From 113 patients, 62,8% were female, with an average of 26 years old, 52,7% declaring themselves to have brown skin color and 80,5% living in the country side of the State, with low-income and with low level of education. About 92% had the SS subtype, the most serious one. The percentage of neonatal diagnosis was only 27.4%. Regarding the SF-36 questionnaires, the quality of life was classified as poor in relation to the physical component and good in the mental component. The use of hydroxyurea - the only medication approved in Brazil for the control and prevention of pain crises - promoted an improvement in the physical domain of patients with SCD, however, without relation to the prevalence of clinical complications. HbF levels greater than or equal to 20% had positive effects on the mental component of patients with the disease. Having had their QoL impaired by the disease, sickle cell patients need State actions sensitive to this Public Health problem. |
publishDate |
2019 |
dc.date.accessioned.fl_str_mv |
2019-08-23T18:13:39Z |
dc.date.issued.fl_str_mv |
2019-08-07 |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/masterThesis |
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masterThesis |
status_str |
publishedVersion |
dc.identifier.citation.fl_str_mv |
RODRIGUES, Camila Freitas de Andrade. Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida. 2019. 117 f. Dissertação (Programa de Pós-Graduação em Saúde do Adulto/CCBS) - Universidade Federal do Maranhão, São Luís. |
dc.identifier.uri.fl_str_mv |
https://tedebc.ufma.br/jspui/handle/tede/tede/2826 |
identifier_str_mv |
RODRIGUES, Camila Freitas de Andrade. Aspectos físicos e mentais de pacientes com doença falciforme: um estudo sobre qualidade de vida. 2019. 117 f. Dissertação (Programa de Pós-Graduação em Saúde do Adulto/CCBS) - Universidade Federal do Maranhão, São Luís. |
url |
https://tedebc.ufma.br/jspui/handle/tede/tede/2826 |
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por |
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por |
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Universidade Federal do Maranhão |
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PROGRAMA DE PÓS-GRADUAÇÃO EM SAÚDE DO ADULTO E DA CRIANÇA/CCBS |
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UFMA |
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Brasil |
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DEPARTAMENTO DE CIÊNCIAS FISIOLÓGICAS/CCBS |
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Universidade Federal do Maranhão |
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