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

BACKGROUND: 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...

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Autores principales: Moreno-Medina, Karen, Barrera-Castañeda, Magally, Vargas-Acevedo, Catalina, García-Torres, Alberto E., Ronderos, Miguel, Huertas-Quiñones, Manuel, Cabrera, Silvana, Domínguez, María Teresa, Sandoval Reyes, Nestor, Dennis, Rodolfo J.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6945590/
https://www.ncbi.nlm.nih.gov/pubmed/31907046
http://dx.doi.org/10.1186/s12955-019-1265-z
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author Moreno-Medina, Karen
Barrera-Castañeda, Magally
Vargas-Acevedo, Catalina
García-Torres, Alberto E.
Ronderos, Miguel
Huertas-Quiñones, Manuel
Cabrera, Silvana
Domínguez, María Teresa
Sandoval Reyes, Nestor
Dennis, Rodolfo J.
author_facet Moreno-Medina, Karen
Barrera-Castañeda, Magally
Vargas-Acevedo, Catalina
García-Torres, Alberto E.
Ronderos, Miguel
Huertas-Quiñones, Manuel
Cabrera, Silvana
Domínguez, María Teresa
Sandoval Reyes, Nestor
Dennis, Rodolfo J.
author_sort Moreno-Medina, Karen
collection PubMed
description BACKGROUND: 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.
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spelling pubmed-69455902020-01-07 Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up Moreno-Medina, Karen Barrera-Castañeda, Magally Vargas-Acevedo, Catalina García-Torres, Alberto E. Ronderos, Miguel Huertas-Quiñones, Manuel Cabrera, Silvana Domínguez, María Teresa Sandoval Reyes, Nestor Dennis, Rodolfo J. Health Qual Life Outcomes Research BACKGROUND: 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. BioMed Central 2020-01-06 /pmc/articles/PMC6945590/ /pubmed/31907046 http://dx.doi.org/10.1186/s12955-019-1265-z Text en © The Author(s). 2020 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research
Moreno-Medina, Karen
Barrera-Castañeda, Magally
Vargas-Acevedo, Catalina
García-Torres, Alberto E.
Ronderos, Miguel
Huertas-Quiñones, Manuel
Cabrera, Silvana
Domínguez, María Teresa
Sandoval Reyes, Nestor
Dennis, Rodolfo J.
Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
title Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
title_full Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
title_fullStr Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
title_full_unstemmed Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
title_short Quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
title_sort quality of life in children with infrequent congenital heart defects: cohort study with one-year of follow-up
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6945590/
https://www.ncbi.nlm.nih.gov/pubmed/31907046
http://dx.doi.org/10.1186/s12955-019-1265-z
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