Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center
| Autor(a) principal: | |
|---|---|
| Data de Publicação: | 2013 |
| Outros Autores: | , , , , , |
| Tipo de documento: | Artigo |
| Idioma: | eng |
| Título da fonte: | Repositório Institucional da UFJF |
| Texto Completo: | http://dx.doi.org/10.5581/1516-8484.20130108 https://repositorio.ufjf.br/jspui/handle/ufjf/7996 |
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2018-11-19T17:25:24Z2018-11-142018-11-19T17:25:24Z2013355314318http://dx.doi.org/10.5581/1516-8484.20130108https://repositorio.ufjf.br/jspui/handle/ufjf/7996-BACKGROUND Studies on health-related quality of life are based on the increasingly evident need for medical care not to be limited to preventing death, but to focus instead on the value of health. OBJECTIVE This study aimed to measure the health-related quality of life in hemophilia, using the Hemophilia- Specific Quality of Life (Haem-A-QoL) questionnaire and describe the socioeconomic characteristics and health conditions of these patients. METHODS The Brazilian version of the Hemophilia-Specific Quality of Life questionnaire was administered to hemophiliac adults, treated in an on-demand regime at the Juiz de Fora Regional Blood Center - HEMOMINAS Foundation. The patients were interviewed about demographic and socioeconomic data and their understanding of the questionnaire. Clinical data were collected from medical records. The Mann-Whitney U test was used for statistical analysis. The level of significance was set for p-values < 0.05. Statistical analysis was performed using the Statistical Package for the Social Sciences (SPSS, version 15.0). RESULTS Thirty-nine patients were evaluated. The mean age was 36.8 years. 84.6% had hemophilia A; 20.5% of the patients had hemophilia classified as mild, 41% as moderate and 38.5% as severe. The records of 10.5% of the patients registered seropositivity for anti-HIV and 57.9% for anti-HCV. Target joints were detected in 69.2%. The mean total Hemophilia-Specific Quality of Life score was 35.55. 'Sports and leisure'and 'Physical health'were the most impaired dimensions and the dimension 'Relationship and partners'was the least impaired. The Hemophilia-Specific Quality of Life scores showed good discriminant validity for hemophilia severity (p-value = 0.001), HIV-infection (p-value = 0.02), HCV-infection (p-value = 0.01) and the presence of target joints (p-value < 0.001). CONCLUSION Health-related quality of life in hemophilia, measured by the Hemophilia-Specific Quality of Life questionnaire, was influenced by the presence of arthropathy and infectious diseases transmitted by blood products. Rehabilitation measures should be encouraged in order to improve the quality of life of these patients.eng--BrasilRevista Brasileira de Hematologia e Hemoterapia-Hemophilia AHemophilia BMusculoskeletal diseases/etiologyJoint diseasesQuality of lifeQuestionnairesHealth-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood centerinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleFerreira, Adriana AparecidaLeite, Isabel Cristina GonçalvesTeixeira, Maria Teresa BustamanteCorrêa, Camila Soares LimaCruz, Danielle Teles daRodrigues, Daniela de Oliveira WerneckFerreira, Monica Calil Borgesinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFJFinstname:Universidade Federal de Juiz de Fora (UFJF)instacron:UFJFTHUMBNAILHealth-related quality of life in hemophilia.pdf.jpgHealth-related quality of life in hemophilia.pdf.jpgGenerated Thumbnailimage/jpeg1663https://repositorio.ufjf.br/jspui/bitstream/ufjf/7996/4/Health-related%20quality%20of%20life%20in%20hemophilia.pdf.jpgf2f36274e5a4227cd2a032ce38f836c7MD54ORIGINALHealth-related quality of life in hemophilia.pdfHealth-related quality of life in hemophilia.pdfapplication/pdf355041https://repositorio.ufjf.br/jspui/bitstream/ufjf/7996/1/Health-related%20quality%20of%20life%20in%20hemophilia.pdfaa6f0faea5308a270710d67a59cc5ec3MD51LICENSElicense.txtlicense.txttext/plain; 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| dc.title.pt_BR.fl_str_mv |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| title |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| spellingShingle |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center Ferreira, Adriana Aparecida - Hemophilia A Hemophilia B Musculoskeletal diseases/etiology Joint diseases Quality of life Questionnaires |
| title_short |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| title_full |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| title_fullStr |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| title_full_unstemmed |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| title_sort |
Health-related quality of life in hemophilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center |
| author |
Ferreira, Adriana Aparecida |
| author_facet |
Ferreira, Adriana Aparecida Leite, Isabel Cristina Gonçalves Teixeira, Maria Teresa Bustamante Corrêa, Camila Soares Lima Cruz, Danielle Teles da Rodrigues, Daniela de Oliveira Werneck Ferreira, Monica Calil Borges |
| author_role |
author |
| author2 |
Leite, Isabel Cristina Gonçalves Teixeira, Maria Teresa Bustamante Corrêa, Camila Soares Lima Cruz, Danielle Teles da Rodrigues, Daniela de Oliveira Werneck Ferreira, Monica Calil Borges |
| author2_role |
author author author author author author |
| dc.contributor.author.fl_str_mv |
Ferreira, Adriana Aparecida Leite, Isabel Cristina Gonçalves Teixeira, Maria Teresa Bustamante Corrêa, Camila Soares Lima Cruz, Danielle Teles da Rodrigues, Daniela de Oliveira Werneck Ferreira, Monica Calil Borges |
| dc.subject.cnpq.fl_str_mv |
- |
| topic |
- Hemophilia A Hemophilia B Musculoskeletal diseases/etiology Joint diseases Quality of life Questionnaires |
| dc.subject.por.fl_str_mv |
Hemophilia A Hemophilia B Musculoskeletal diseases/etiology Joint diseases Quality of life Questionnaires |
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- |
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2013 |
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2013 |
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2018-11-19T17:25:24Z |
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2018-11-14 2018-11-19T17:25:24Z |
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info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
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article |
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https://repositorio.ufjf.br/jspui/handle/ufjf/7996 |
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http://dx.doi.org/10.5581/1516-8484.20130108 |
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http://dx.doi.org/10.5581/1516-8484.20130108 https://repositorio.ufjf.br/jspui/handle/ufjf/7996 |
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eng |
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eng |
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Revista Brasileira de Hematologia e Hemoterapia |
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openAccess |
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Brasil |
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