Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele
Ano de defesa: | 2009 |
---|---|
Autor(a) principal: | |
Orientador(a): | |
Banca de defesa: | |
Tipo de documento: | Dissertação |
Tipo de acesso: | Acesso aberto |
Idioma: | por |
Instituição de defesa: |
Universidade Federal de Uberlândia
|
Programa de Pós-Graduação: |
Programa de Pós-graduação em Ciências da Saúde
|
Departamento: |
Ciências da Saúde
|
País: |
BR
|
Palavras-chave em Português: | |
Palavras-chave em Inglês: | |
Área do conhecimento CNPq: | |
Link de acesso: | https://repositorio.ufu.br/handle/123456789/12668 |
Resumo: | Myelomenigocele (MM) is the most common and disabling disorder of neural tube defects. It is associated to several health problems and to motor and sensitive disabilities. This condition may impair patient s health-related quality of life (HRQL). However, it is not established how different neurological lesion levels and functional ambulation influence HRQL. This study aimed at assessing the HRQL of children and adolescents with MM in comparison with healthy controls of the same age and according to the lesion level and functional ambulation. Patients with MM followed at AACDMG, aged 5 to 18 years, and healthy controls of the same age and sex were recruited for this study. Patients were classified according to the neurological lesion level (thoracic, upper lumbar, lower lumbar and sacral) and to functional ambulation (community ambulators, household ambulators, nonfunctional ambulators and non-ambulators). Clinical and demographic data were obtained by interview with caregivers and by information collected in medical records. The Child Health Questionnaire (CHQ-PF50) was self-administered to parents/proxies. Psychometric properties were assessed by data quality (rate of lost data, floor and ceiling effects) and reliability (item internal consistency and reliability of internal consistency). Patients scores were compared with controls and according to functional ambulation (Mann-Whitney test) and to neurological lesion level (Kruskal-Wallis test). Thirty participants in the study group and 60 in the control group answered the questionnaire. Patients mean age was 8.3 years. The rate of lost data was low (ranged from 0.0% to 10.0%). Ceiling effect was observed in 10 scales (ranged from 0.0% to 56.7%). In general, reliability was considered appropriate since the scale general health was the only one with low values of tem internal consistency (success rate of 60%) and internal consistency reliability (Cronbach s alpha of -0.37). Patients had lower scores in comparison to controls on 8 scales and on physical summary of CHQPF50 (p< 0.05). There was no difference among patients according to the neurologic lesion level and to the functional ambulation (p> 0.05). These results confirm physical and psychosocial impairment of HRQL of children and adolescents with MM, according to their proxies perspective, with similar findings among the different neurological lesion levels and functional ambulation. This study point to the need of a multidisciplinary approach to all patients, independently of lesion level or functional ability. |
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2016-06-22T18:32:57Z2009-12-102016-06-22T18:32:57Z2009-08-11SANTOS, Eliane Medeiros dos. Health-related quality of life of children and adolescents with meylomeningocele. 2009. 75 f. Dissertação (Mestrado em Ciências da Saúde) - Universidade Federal de Uberlândia, Uberlândia, 2009.https://repositorio.ufu.br/handle/123456789/12668Myelomenigocele (MM) is the most common and disabling disorder of neural tube defects. It is associated to several health problems and to motor and sensitive disabilities. This condition may impair patient s health-related quality of life (HRQL). However, it is not established how different neurological lesion levels and functional ambulation influence HRQL. This study aimed at assessing the HRQL of children and adolescents with MM in comparison with healthy controls of the same age and according to the lesion level and functional ambulation. Patients with MM followed at AACDMG, aged 5 to 18 years, and healthy controls of the same age and sex were recruited for this study. Patients were classified according to the neurological lesion level (thoracic, upper lumbar, lower lumbar and sacral) and to functional ambulation (community ambulators, household ambulators, nonfunctional ambulators and non-ambulators). Clinical and demographic data were obtained by interview with caregivers and by information collected in medical records. The Child Health Questionnaire (CHQ-PF50) was self-administered to parents/proxies. Psychometric properties were assessed by data quality (rate of lost data, floor and ceiling effects) and reliability (item internal consistency and reliability of internal consistency). Patients scores were compared with controls and according to functional ambulation (Mann-Whitney test) and to neurological lesion level (Kruskal-Wallis test). Thirty participants in the study group and 60 in the control group answered the questionnaire. Patients mean age was 8.3 years. The rate of lost data was low (ranged from 0.0% to 10.0%). Ceiling effect was observed in 10 scales (ranged from 0.0% to 56.7%). In general, reliability was considered appropriate since the scale general health was the only one with low values of tem internal consistency (success rate of 60%) and internal consistency reliability (Cronbach s alpha of -0.37). Patients had lower scores in comparison to controls on 8 scales and on physical summary of CHQPF50 (p< 0.05). There was no difference among patients according to the neurologic lesion level and to the functional ambulation (p> 0.05). These results confirm physical and psychosocial impairment of HRQL of children and adolescents with MM, according to their proxies perspective, with similar findings among the different neurological lesion levels and functional ambulation. This study point to the need of a multidisciplinary approach to all patients, independently of lesion level or functional ability.A mielomeningocele (MM) é a forma mais freqüente e incapacitante dos defeitos de fechamento do tubo neural. As limitações motoras e sensitivas e os diversos problemas de saúde associados a essa condição podem comprometer a qualidade de vida relacionada à saúde (QVRS) dos portadores. Todavia, não esta claro como os diferentes níveis de lesão e de comprometimento motor influenciam na QVRS. O objetivo deste estudo foi avaliar a QVRS de crianças e adolescente com MM em comparação com indivíduos saudáveis da mesma faixa etária, e segundo o nível de lesão medular e o padrão de deambulação. Participaram do estudo portadores de MM entre 5 e 18 anos de idade, acompanhados na AACD-MG e indivíduos saudáveis pareados por idade e sexo. Os pacientes foram classificados segundo o nível neurológico da lesão medular (torácico, lombar alto, lombar baixo ou sacral) e o padrão de deambulação (comunitário, domiciliar, não funcional ou não deambulador). Os dados demográficos e clínicos foram obtidos por entrevista com o cuidador e completados com informações contidas no prontuário médico. O Child Health Questionnaire (CHQ-PF50) foi respondido pelos pais/responsáveis pela técnica de auto-aplicação. As propriedades psicométricas foram avaliadas pela qualidade dos dados (proporção de dados perdidos, efeito piso e efeito teto) e confiabilidade (consistência interna do item e confiabilidade da consistência interna). Os escores dos pacientes foram comparados com os do grupo controle e segundo o padrão de deambulação (teste de Mann-Whitney) e o nível neurológico da lesão (teste de Kruskall-Wallis). O questionário foi respondido por 30 participantes no grupo de estudo e 60 no grupo controle. A idade média dos pacientes foi de 8,3 anos. A taxa de dados perdidos foi baixa (variou de 0,0% a 6,7%). O efeito piso foi observado em duas escalas (variou de 0,0% a 10%). O efeito teto foi detectado em 10 escalas (variou de 0,0% a 56,7%). A confiabilidade foi adequada como um todo, apenas a escala percepção de saúde mostrou valores insatisfatórios quanto à consistência interna do item (taxa de sucesso = 60%) e a confiabilidade da consistência interna (coeficiente de alfa Cronbach = - 0,37), simultaneamente. Os pacientes obtiveram escores menores que os controles em oito escalas e no sumário físico do CHQPF50 (p≤0,05). Não ocorreu diferença entre os pacientes segundo o nível de lesão e o padrão de deambulação (p>0,05). Os resultados confirmaram que crianças e adolescentes com MM apresentam prejuízo físico e psicossocial na QVRS pela perspectiva dos responsáveis. O impacto foi semelhante entre os diferentes níveis de lesão ou padrões de deambulação. Esses resultados implicam na necessidade de uma abordagem interdisciplinar a todos os portadores, independentemente do tipo de lesão ou de incapacidade motora.Mestre em Ciências da Saúdeapplication/pdfporUniversidade Federal de UberlândiaPrograma de Pós-graduação em Ciências da SaúdeUFUBRCiências da SaúdeMielomeningoceleQualidade de vidaAdolescentesCriançasDefeito do tubo neuralAdolescentsChildrenNeural tube defectMyelomeningoceleQuality of lifeCNPQ::CIENCIAS DA SAUDEQualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningoceleHealth-related quality of life of children and adolescents with meylomeningoceleinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisMorales, Nívea de Macedo Oliveirahttp://buscatextual.cnpq.br/buscatextual/visualizacv.do?id=K4138236J8http://buscatextual.cnpq.br/buscatextual/visualizacv.do?id=K4257090U1Santos, Eliane Medeiros dosinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFUinstname:Universidade Federal de Uberlândia (UFU)instacron:UFUTHUMBNAILEliane.pdf.jpgEliane.pdf.jpgGenerated Thumbnailimage/jpeg1214https://repositorio.ufu.br/bitstream/123456789/12668/3/Eliane.pdf.jpg71a81831d99e8d864180fbebfbe576ddMD53ORIGINALEliane.pdfapplication/pdf1602283https://repositorio.ufu.br/bitstream/123456789/12668/1/Eliane.pdfd0646dbf700f1fef457208a796262b79MD51TEXTEliane.pdf.txtEliane.pdf.txtExtracted texttext/plain118709https://repositorio.ufu.br/bitstream/123456789/12668/2/Eliane.pdf.txt0f875dd064bf0a86da9ec7a9f40a246bMD52123456789/126682016-06-23 03:09:14.494oai:repositorio.ufu.br:123456789/12668Repositório InstitucionalONGhttp://repositorio.ufu.br/oai/requestdiinf@dirbi.ufu.bropendoar:2016-06-23T06:09:14Repositório Institucional da UFU - Universidade Federal de Uberlândia (UFU)false |
dc.title.por.fl_str_mv |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
dc.title.alternative.eng.fl_str_mv |
Health-related quality of life of children and adolescents with meylomeningocele |
title |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
spellingShingle |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele Santos, Eliane Medeiros dos Mielomeningocele Qualidade de vida Adolescentes Crianças Defeito do tubo neural Adolescents Children Neural tube defect Myelomeningocele Quality of life CNPQ::CIENCIAS DA SAUDE |
title_short |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
title_full |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
title_fullStr |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
title_full_unstemmed |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
title_sort |
Qualidade de vida relacionada à saúde em crianças e adolescentes com mielomeningocele |
author |
Santos, Eliane Medeiros dos |
author_facet |
Santos, Eliane Medeiros dos |
author_role |
author |
dc.contributor.advisor1.fl_str_mv |
Morales, Nívea de Macedo Oliveira |
dc.contributor.advisor1Lattes.fl_str_mv |
http://buscatextual.cnpq.br/buscatextual/visualizacv.do?id=K4138236J8 |
dc.contributor.authorLattes.fl_str_mv |
http://buscatextual.cnpq.br/buscatextual/visualizacv.do?id=K4257090U1 |
dc.contributor.author.fl_str_mv |
Santos, Eliane Medeiros dos |
contributor_str_mv |
Morales, Nívea de Macedo Oliveira |
dc.subject.por.fl_str_mv |
Mielomeningocele Qualidade de vida Adolescentes Crianças Defeito do tubo neural |
topic |
Mielomeningocele Qualidade de vida Adolescentes Crianças Defeito do tubo neural Adolescents Children Neural tube defect Myelomeningocele Quality of life CNPQ::CIENCIAS DA SAUDE |
dc.subject.eng.fl_str_mv |
Adolescents Children Neural tube defect Myelomeningocele Quality of life |
dc.subject.cnpq.fl_str_mv |
CNPQ::CIENCIAS DA SAUDE |
description |
Myelomenigocele (MM) is the most common and disabling disorder of neural tube defects. It is associated to several health problems and to motor and sensitive disabilities. This condition may impair patient s health-related quality of life (HRQL). However, it is not established how different neurological lesion levels and functional ambulation influence HRQL. This study aimed at assessing the HRQL of children and adolescents with MM in comparison with healthy controls of the same age and according to the lesion level and functional ambulation. Patients with MM followed at AACDMG, aged 5 to 18 years, and healthy controls of the same age and sex were recruited for this study. Patients were classified according to the neurological lesion level (thoracic, upper lumbar, lower lumbar and sacral) and to functional ambulation (community ambulators, household ambulators, nonfunctional ambulators and non-ambulators). Clinical and demographic data were obtained by interview with caregivers and by information collected in medical records. The Child Health Questionnaire (CHQ-PF50) was self-administered to parents/proxies. Psychometric properties were assessed by data quality (rate of lost data, floor and ceiling effects) and reliability (item internal consistency and reliability of internal consistency). Patients scores were compared with controls and according to functional ambulation (Mann-Whitney test) and to neurological lesion level (Kruskal-Wallis test). Thirty participants in the study group and 60 in the control group answered the questionnaire. Patients mean age was 8.3 years. The rate of lost data was low (ranged from 0.0% to 10.0%). Ceiling effect was observed in 10 scales (ranged from 0.0% to 56.7%). In general, reliability was considered appropriate since the scale general health was the only one with low values of tem internal consistency (success rate of 60%) and internal consistency reliability (Cronbach s alpha of -0.37). Patients had lower scores in comparison to controls on 8 scales and on physical summary of CHQPF50 (p< 0.05). There was no difference among patients according to the neurologic lesion level and to the functional ambulation (p> 0.05). These results confirm physical and psychosocial impairment of HRQL of children and adolescents with MM, according to their proxies perspective, with similar findings among the different neurological lesion levels and functional ambulation. This study point to the need of a multidisciplinary approach to all patients, independently of lesion level or functional ability. |
publishDate |
2009 |
dc.date.available.fl_str_mv |
2009-12-10 2016-06-22T18:32:57Z |
dc.date.issued.fl_str_mv |
2009-08-11 |
dc.date.accessioned.fl_str_mv |
2016-06-22T18:32:57Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/masterThesis |
format |
masterThesis |
status_str |
publishedVersion |
dc.identifier.citation.fl_str_mv |
SANTOS, Eliane Medeiros dos. Health-related quality of life of children and adolescents with meylomeningocele. 2009. 75 f. Dissertação (Mestrado em Ciências da Saúde) - Universidade Federal de Uberlândia, Uberlândia, 2009. |
dc.identifier.uri.fl_str_mv |
https://repositorio.ufu.br/handle/123456789/12668 |
identifier_str_mv |
SANTOS, Eliane Medeiros dos. Health-related quality of life of children and adolescents with meylomeningocele. 2009. 75 f. Dissertação (Mestrado em Ciências da Saúde) - Universidade Federal de Uberlândia, Uberlândia, 2009. |
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Universidade Federal de Uberlândia |
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Ciências da Saúde |
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Universidade Federal de Uberlândia |
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