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Quality of life in children with infrequent congenital heart defects: Cohort study with one-year of follow-up

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dc.creatorMoreno-Medina, Karenspa
dc.creatorBarrera-Castañeda, Magallyspa
dc.creatorVargas-Acevedo, Catalinaspa
dc.creatorGarcía-Torres, Alberto E.spa
dc.creatorRonderos, Miguelspa
dc.creatorHuertas-Quiñones, Manuelspa
dc.creatorCabrera, Silvanaspa
dc.creatorDomínguez, María Teresaspa
dc.creatorSandoval Reyes, Nestorspa
dc.creatorDennis Verano, Rodolfo Joséspa
dc.date.accessioned2020-05-26T00:09:48Z
dc.date.available2020-05-26T00:09:48Z
dc.date.created2020spa
dc.description.abstractBackground: The evidence regarding patient related outcomes in children with infrequent congenital heart defects (I-CHD) is very limited. We sought to measure quality of life (QoL) in children with I-CHD, and secondarily, to describe QoL changes after one-year of follow-up, self-reported by children and through their caregivers' perspective. Methods: We assembled a cohort of children diagnosed with an I-CHD in a cardiovascular referral center in Colombia, between August 2016 and September 2018. At baseline and at one-year follow-up, a clinical psychology assessment was performed to establish perception of QoL. The Pediatric Quality of Life Inventory (PedsQL) 4.0 scale was used in both general and cardiac modules for patients and for their caregivers. We used a Mann-Whitney U test to compare scores for general and cardiac modules between patients and caregivers, while a Wilcoxon test was used to compared patients' and caregivers' baseline and follow-up scores. Results are presented as median and interquartile range. Results: To date, QoL evaluation at one-year follow-up has been achieved in 112/157 patients (71%). Self-reported scores in general and cardiac modules were higher than the QoL perceived through their caregivers, both at baseline and after one-year of follow-up. When compared, there was no statistically significant difference in general module scores at baseline between patients (median = 74.4, IQR = 64.1-80.4) and caregivers scores (median = 68.4, IQR = 59.6-83.7), p = 0.296. On the contrary, there was a statistical difference in baseline scores in the cardiac module between patients (median = 79.6, IQR = 69.7-87.4) and caregivers (median = 73.6, IQR = 62.6-84.3), p = 0.019. At one-year of follow-up, scores for the general module between patients (median = 72.8, IQR = 59.2-85.9) and caregivers (median = 69.9, IQR = 58.1-83.7) were not statistically different (p = 0.332). Finally, a significant difference was found for cardiac module scores between patient (median = 75.0, IQR = 67.1-87.1) and caregivers (median = 73.1, IQR = 59.5-83.8), p = 0.034. Conclusions: QoL in children with I-CHD can be compromised. However, children have a better perception of their QoL when compared with their caregivers' assessments. To provide high-quality care, besides a thorough clinical evaluation, QoL directly elicited by the child should be an essential aspect in the integral management of I-CHD. © 2020 The Author(s).eng
dc.format.mimetypeapplication/pdf
dc.identifier.doihttps://doi.org/10.1186/s12955-019-1265-z
dc.identifier.issn14777525
dc.identifier.urihttps://repository.urosario.edu.co/handle/10336/24180
dc.language.isoengspa
dc.publisherBioMed Central Ltd.spa
dc.relation.citationIssueNo. 1
dc.relation.citationTitleHealth and Quality of Life Outcomes
dc.relation.citationVolumeVol. 18
dc.relation.ispartofHealth and Quality of Life Outcomes, ISSN:14777525, Vol.18, No.1 (2020)spa
dc.relation.urihttps://www.scopus.com/inward/record.uri?eid=2-s2.0-85077629907&doi=10.1186%2fs12955-019-1265-z&partnerID=40&md5=d4572c66729a37f29345783264a850bfspa
dc.rights.accesRightsinfo:eu-repo/semantics/openAccess
dc.rights.accesoAbierto (Texto Completo)spa
dc.source.instnameinstname:Universidad del Rosariospa
dc.source.reponamereponame:Repositorio Institucional EdocURspa
dc.subject.keywordAdolescentspa
dc.subject.keywordcongenitaleng
dc.subject.keywordAortic arch interruptionspa
dc.subject.keywordArticlespa
dc.subject.keywordCaregiverspa
dc.subject.keywordChildspa
dc.subject.keywordClinical assessmentspa
dc.subject.keywordClinical evaluationspa
dc.subject.keywordCohort analysisspa
dc.subject.keywordColombiaspa
dc.subject.keywordCongenital heart malformationspa
dc.subject.keywordEbstein anomalyspa
dc.subject.keywordFemalespa
dc.subject.keywordFollow upspa
dc.subject.keywordHeterotaxy syndromespa
dc.subject.keywordHumanspa
dc.subject.keywordMajor clinical studyspa
dc.subject.keywordMalespa
dc.subject.keywordPediatric quality of life inventoryspa
dc.subject.keywordPreschool childspa
dc.subject.keywordPsychologic assessmentspa
dc.subject.keywordPulmonary valve stenosisspa
dc.subject.keywordQuality of lifespa
dc.subject.keywordQuality of life assessmentspa
dc.subject.keywordSchool childspa
dc.subject.keywordSelf reportspa
dc.subject.keywordSex differencespa
dc.subject.keywordWilliams beuren syndromespa
dc.subject.keywordCongenital heart malformationspa
dc.subject.keywordPsychologyspa
dc.subject.keywordQuality of lifespa
dc.subject.keywordCaregiversspa
dc.subject.keywordChildspa
dc.subject.keywordChildeng
dc.subject.keywordColombiaspa
dc.subject.keywordFemalespa
dc.subject.keywordFollow-up studiesspa
dc.subject.keywordHeart defectseng
dc.subject.keywordHumansspa
dc.subject.keywordMalespa
dc.subject.keywordQuality of lifespa
dc.subject.keywordSelf reportspa
dc.subject.keywordCaregiversspa
dc.subject.keywordColombiaspa
dc.subject.keywordCongenital heart defectsspa
dc.subject.keywordQuality of lifespa
dc.titleQuality of life in children with infrequent congenital heart defects: Cohort study with one-year of follow-upspa
dc.typearticleeng
dc.type.hasVersioninfo:eu-repo/semantics/publishedVersion
dc.type.spaArtículospa
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