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http://hdl.handle.net/1843/53517| Type: | Artigo de Periódico |
| Title: | Quality of life in pre-adolescent children with sickle cell disease in Brazil |
| Authors: | Claudia di Lorenzooliveira Rosimere Afonso Mota Carolina Miranda Teixeira Paula Loureiro Ester Cerdeira Sabino Brian Custer For The Recipient Epidemiology And Donor Evaluation Study (r Shannon Kelly Cesar de Almeida-neto Anna Barbara Carneiro-proietti Fabiana Chagas Camargos Piassi Tassila Salomon Miriam v. Flor-park Claudia Maximo Daniela Werneck Rodrigues |
| Abstract: | Sickle cell disease (SCD)affects more than 13 million people and can have a significant impact on the quality of life (QoL) of those persons. We performed a cross-sectional study to evaluate the QoL in SCD children 8–12 years old enrolled from November 2014 to March 2016 in a large multi-center cohort study in Brazil. The PedsQL™ SCD Module was used to evaluate QoL in 412 children from six Brazilian health centers. The mean age of participants was 10.5 years and 193(46.7%) were female. The mean global score was 60.7, with a Cronbachś alpha of 0.92. There were significant differences in socioeconomic demographics and treatments among participants at the six centers, but age, income, SCD genotype, and use of hydroxyurea did not significantly affect the QoL scores. After adjustment for all of these variables in a linear regression model, a significant difference was observed by site in global QoL score and the dimensions ‘worry II’ (β0=20.7,p<0.00), ‘treatment´(β0=66.8,p<0.00) and communication II’(β0=45.8,p<0.00). These dimensions are affected by the capacity of health professionals to provide clinical and psychological support to patients. Our results suggest that QoL of this patient population varied according the health center even adjusted by sociodemographics characteristics. Additional training of health professionals in psychological and clinical support could directly reduce patient apprehension about the disease its clinical complications. |
| Subject: | Anemia Falciforme Qualidade de Vida Criança |
| language: | eng |
| metadata.dc.publisher.country: | Brasil |
| Publisher: | Universidade Federal de Minas Gerais |
| Publisher Initials: | UFMG |
| metadata.dc.publisher.department: | MED - DEPARTAMENTO DE PROPEDÊUTICA COMPLEMENTAR |
| Rights: | Acesso Restrito |
| metadata.dc.identifier.doi: | 10.1080/08880018.2019.1660743 |
| URI: | http://hdl.handle.net/1843/53517 |
| Issue Date: | 1-Nov-2020 |
| metadata.dc.url.externa: | https://www.tandfonline.com/doi/full/10.1080/08880018.2019.1660743 |
| metadata.dc.relation.ispartof: | Pediatric Hematology and Oncology |
| Appears in Collections: | Artigo de Periódico |
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