Quality of life in pre-adolescent children with sickle cell disease in Brazil

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dc.creatorClaudia di Lorenzooliveira
dc.creatorRosimere Afonso Mota
dc.creatorCarolina Miranda Teixeira
dc.creatorPaula Loureiro
dc.creatorEster Cerdeira Sabino
dc.creatorBrian Custer
dc.creatorFor The Recipient Epidemiology And Donor Evaluation Study (r
dc.creatorShannon Kelly
dc.creatorCesar de Almeida-neto
dc.creatorAnna Barbara Carneiro-proietti
dc.creatorFabiana Chagas Camargos Piassi
dc.creatorTassila Salomon
dc.creatorMiriam v. Flor-park
dc.creatorClaudia Maximo
dc.creatorDaniela Werneck Rodrigues
dc.date.accessioned2023-05-17T20:08:56Z
dc.date.accessioned2025-09-08T23:49:43Z
dc.date.available2023-05-17T20:08:56Z
dc.date.issued2020-11-01
dc.format.mimetypepdf
dc.identifier.doi10.1080/08880018.2019.1660743
dc.identifier.issn08880018
dc.identifier.urihttps://hdl.handle.net/1843/53517
dc.languageeng
dc.publisherUniversidade Federal de Minas Gerais
dc.relation.ispartofPediatric Hematology and Oncology
dc.rightsAcesso Restrito
dc.subjectAnemia Falciforme
dc.subjectQualidade de Vida
dc.subjectCriança
dc.subject.otherSickle cell disease
dc.subject.otherChildren
dc.subject.otherQuality of life
dc.subject.otherPedsQL
dc.titleQuality of life in pre-adolescent children with sickle cell disease in Brazil
dc.typeArtigo de periódico
local.citation.epage467
local.citation.issue8
local.citation.spage457
local.citation.volume36
local.description.resumoSickle 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.
local.identifier.orcidhttps://orcid.org/0000-0002-8983-9114
local.publisher.countryBrasil
local.publisher.departmentMED - DEPARTAMENTO DE PROPEDÊUTICA COMPLEMENTAR
local.publisher.initialsUFMG
local.url.externahttps://www.tandfonline.com/doi/full/10.1080/08880018.2019.1660743

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