Qualidade de vida em portadores de doença falciforme
Autor(a) principal: | |
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Data de Publicação: | 2011 |
Tipo de documento: | Dissertação |
Idioma: | por |
Título da fonte: | Repositório Institucional da UNIFESP |
Texto Completo: | https://repositorio.unifesp.br/handle/11600/9996 |
Resumo: | Objective. 1) To evaluate the quality of life in children and adolescents with sickle cell disease attending the Blood Center reference. 2) To evaluate the quality of life of relatives of these patients. Method. We selected 100 patients (64 female, 34 male) with sickle cell disease that were divided into three subgroups with age: 5 to 7 (n = 18), 8-12 (n = 32) and 13 to 18 (n = 20), and their parents. The control group was 50 healthy children and adolescents from a public school local, also divided into the same three subgroups of age and their caregivers. The Questionnaire Pediatric Quality of life Inventory - PedsQL version 4.0 was applied in both groups - children and adolescents, in the family was applied the generic questionnaire Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36). The answers were linearly transformed into a score and compared. Results: The scores of patients were significantly lower than the scores of the control group (p <0.0001) in all four areas studied (physical, emotional, social and school activities). In the version for parents was the same in almost all respects, with the loss of quality of life more meaningful (more than 50%) were related to the socio-emotional, mental health, limited by the physical appearance and general state of health. Conclusion: Sickle cell disease affects the quality of life of children, adolescents and their families. Patients perceive restrictions in the emotional, social / family and physical and others. |
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Qualidade de vida em portadores de doença falciformeQuality of life in patients with sickle cell diseaseAdolescentChildrenSickle cell diseaseAnemiaQuality of lifeAdolescentesCriançasDoença falciformeAnemiaQualidade de vidaObjective. 1) To evaluate the quality of life in children and adolescents with sickle cell disease attending the Blood Center reference. 2) To evaluate the quality of life of relatives of these patients. Method. We selected 100 patients (64 female, 34 male) with sickle cell disease that were divided into three subgroups with age: 5 to 7 (n = 18), 8-12 (n = 32) and 13 to 18 (n = 20), and their parents. The control group was 50 healthy children and adolescents from a public school local, also divided into the same three subgroups of age and their caregivers. The Questionnaire Pediatric Quality of life Inventory - PedsQL version 4.0 was applied in both groups - children and adolescents, in the family was applied the generic questionnaire Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36). The answers were linearly transformed into a score and compared. Results: The scores of patients were significantly lower than the scores of the control group (p <0.0001) in all four areas studied (physical, emotional, social and school activities). In the version for parents was the same in almost all respects, with the loss of quality of life more meaningful (more than 50%) were related to the socio-emotional, mental health, limited by the physical appearance and general state of health. Conclusion: Sickle cell disease affects the quality of life of children, adolescents and their families. Patients perceive restrictions in the emotional, social / family and physical and others.Objetivos. 1) Avaliar a qualidade de vida relacionada à saúde (QVRS) de crianças e adolescentes com doença falciforme assistidas em um Hemocentro de referência e 2) Mensurar a QVRS dos respectivos familiares. Métodos. Amostra de conveniência de 100 pacientes portadores de doença falciforme (64 do sexo feminino e 34 do sexo masculino), divididos em três subgrupos conforme a faixa etária: de 5 a 7 (n=18), de 8 a 12 (n=32) e de 13 a 18 (n=20) e respectivos pais. O grupo controle foi composto por 50 crianças e adolescentes aparentemente saudáveis de uma escola pública local, também divididos nos mesmos três subgrupos de idade e seus respectivos cuidadores. Foi aplicado o questionário genérico “Pediatric Quality of Life Inventory” (PedsQL) versão 4.0 às crianças e aos adolescentes de ambos os grupos; aos familiares foi aplicando o questionário genérico Medical Outcomes Study 36 – Item Short-Form Health Survey (SF-36). As respostas obtidas foram linearmente transformadas em um escore e comparadas. Resultados. Os escores dos pacientes foram significativamente mais baixos do que os escores do grupo controle (p < 0,0001) em todos os 4 aspectos estudados (capacidade física, emocional, social e atividade escolar). Com relação ao SF-36, aplicados aos pais, observamos que os escores foram mais baixos, sendo as perdas de qualidade de vida mais significativas (superiores a 50%) às relacionadas aos aspectos sócioemocionais, à saúde mental, limitação por aspectos físicos e ao estado geral de saúde. Conclusão. A doença falciforme compromete a qualidade de vida das crianças, dos adolescentes e das respectivas famílias. Os pacientes percebem restrições nos aspectos emocional, social/familiar e físico dentre outros.TEDEBV UNIFESP: Teses e dissertaçõesUniversidade Federal de São Paulo (UNIFESP)Len, Claudio Arnaldo [UNIFESP]Universidade Federal de São Paulo (UNIFESP)Menezes, Adeline Soraya de Oliveira da Paz [UNIFESP]2015-07-22T20:50:40Z2015-07-22T20:50:40Z2011-11-24info:eu-repo/semantics/masterThesisinfo:eu-repo/semantics/publishedVersion51 p.application/pdfapplication/pdfMENEZES, Adeline Soraya de Oliveira da Paz. Qualidade de vida em portadores de doença falciforme. 2011. Dissertação (Mestrado) - Universidade Federal de São Paulo (UNIFESP), São Paulo, 2011.Publico-12620a.pdfPublico-12620b.pdfhttps://repositorio.unifesp.br/handle/11600/9996porinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UNIFESPinstname:Universidade Federal de São Paulo (UNIFESP)instacron:UNIFESP2024-08-11T10:41:49Zoai:repositorio.unifesp.br/:11600/9996Repositório InstitucionalPUBhttp://www.repositorio.unifesp.br/oai/requestbiblioteca.csp@unifesp.bropendoar:34652024-08-11T10:41:49Repositório Institucional da UNIFESP - Universidade Federal de São Paulo (UNIFESP)false |
dc.title.none.fl_str_mv |
Qualidade de vida em portadores de doença falciforme Quality of life in patients with sickle cell disease |
title |
Qualidade de vida em portadores de doença falciforme |
spellingShingle |
Qualidade de vida em portadores de doença falciforme Menezes, Adeline Soraya de Oliveira da Paz [UNIFESP] Adolescent Children Sickle cell disease Anemia Quality of life Adolescentes Crianças Doença falciforme Anemia Qualidade de vida |
title_short |
Qualidade de vida em portadores de doença falciforme |
title_full |
Qualidade de vida em portadores de doença falciforme |
title_fullStr |
Qualidade de vida em portadores de doença falciforme |
title_full_unstemmed |
Qualidade de vida em portadores de doença falciforme |
title_sort |
Qualidade de vida em portadores de doença falciforme |
author |
Menezes, Adeline Soraya de Oliveira da Paz [UNIFESP] |
author_facet |
Menezes, Adeline Soraya de Oliveira da Paz [UNIFESP] |
author_role |
author |
dc.contributor.none.fl_str_mv |
Len, Claudio Arnaldo [UNIFESP] Universidade Federal de São Paulo (UNIFESP) |
dc.contributor.author.fl_str_mv |
Menezes, Adeline Soraya de Oliveira da Paz [UNIFESP] |
dc.subject.por.fl_str_mv |
Adolescent Children Sickle cell disease Anemia Quality of life Adolescentes Crianças Doença falciforme Anemia Qualidade de vida |
topic |
Adolescent Children Sickle cell disease Anemia Quality of life Adolescentes Crianças Doença falciforme Anemia Qualidade de vida |
description |
Objective. 1) To evaluate the quality of life in children and adolescents with sickle cell disease attending the Blood Center reference. 2) To evaluate the quality of life of relatives of these patients. Method. We selected 100 patients (64 female, 34 male) with sickle cell disease that were divided into three subgroups with age: 5 to 7 (n = 18), 8-12 (n = 32) and 13 to 18 (n = 20), and their parents. The control group was 50 healthy children and adolescents from a public school local, also divided into the same three subgroups of age and their caregivers. The Questionnaire Pediatric Quality of life Inventory - PedsQL version 4.0 was applied in both groups - children and adolescents, in the family was applied the generic questionnaire Medical Outcomes Study 36 - Item Short-Form Health Survey (SF-36). The answers were linearly transformed into a score and compared. Results: The scores of patients were significantly lower than the scores of the control group (p <0.0001) in all four areas studied (physical, emotional, social and school activities). In the version for parents was the same in almost all respects, with the loss of quality of life more meaningful (more than 50%) were related to the socio-emotional, mental health, limited by the physical appearance and general state of health. Conclusion: Sickle cell disease affects the quality of life of children, adolescents and their families. Patients perceive restrictions in the emotional, social / family and physical and others. |
publishDate |
2011 |
dc.date.none.fl_str_mv |
2011-11-24 2015-07-22T20:50:40Z 2015-07-22T20:50:40Z |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/masterThesis |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
format |
masterThesis |
status_str |
publishedVersion |
dc.identifier.uri.fl_str_mv |
MENEZES, Adeline Soraya de Oliveira da Paz. Qualidade de vida em portadores de doença falciforme. 2011. Dissertação (Mestrado) - Universidade Federal de São Paulo (UNIFESP), São Paulo, 2011. Publico-12620a.pdf Publico-12620b.pdf https://repositorio.unifesp.br/handle/11600/9996 |
identifier_str_mv |
MENEZES, Adeline Soraya de Oliveira da Paz. Qualidade de vida em portadores de doença falciforme. 2011. Dissertação (Mestrado) - Universidade Federal de São Paulo (UNIFESP), São Paulo, 2011. Publico-12620a.pdf Publico-12620b.pdf |
url |
https://repositorio.unifesp.br/handle/11600/9996 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
51 p. application/pdf application/pdf |
dc.publisher.none.fl_str_mv |
Universidade Federal de São Paulo (UNIFESP) |
publisher.none.fl_str_mv |
Universidade Federal de São Paulo (UNIFESP) |
dc.source.none.fl_str_mv |
reponame:Repositório Institucional da UNIFESP instname:Universidade Federal de São Paulo (UNIFESP) instacron:UNIFESP |
instname_str |
Universidade Federal de São Paulo (UNIFESP) |
instacron_str |
UNIFESP |
institution |
UNIFESP |
reponame_str |
Repositório Institucional da UNIFESP |
collection |
Repositório Institucional da UNIFESP |
repository.name.fl_str_mv |
Repositório Institucional da UNIFESP - Universidade Federal de São Paulo (UNIFESP) |
repository.mail.fl_str_mv |
biblioteca.csp@unifesp.br |
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1814268313269698560 |