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

Abstract

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.

Ventricular septal defect: diagnosis and treatments in the neonates: a systematic review

“…In the cardiac-specific module, "cognitive status" showed the lowest scores in the evaluation both at baseline and follow-up. 27 Therefore, this shows that although children perceive their quality of life to be better than their caregivers, the overall quality of life of children with CHD was generally lower than that of a healthy child. This is also in line with a study carried out by Katelyn Mellion et al, which stated that children with CHD had a significantly lower score on QoL assessment compared to that of healthy controls.…”

“…In this study, 157 children with CHD underwent quality of life (QoL) assessment with 112/157 (71%) achieving 1-year follow-up. 27 The PedsQL 4.0 scale, which included generic and cardiac-specific modules was used for QoL evaluation. 27 Results from both modules showed that the children with CHD showed a better perception in the QoL evaluation compared to their caregivers who showed a less prominent perception of their children's QoL.…”

“…27 The PedsQL 4.0 scale, which included generic and cardiac-specific modules was used for QoL evaluation. 27 Results from both modules showed that the children with CHD showed a better perception in the QoL evaluation compared to their caregivers who showed a less prominent perception of their children's QoL. Overall, there was a lower score recorded for QoL in follow-up compared to baseline evaluation for both the children and their caregivers.…”

Effects of minimally invasive and traditional surgeries on the quality of life of children with congenital heart disease: a retrospective propensity score-matched study

“…Multiple studies have been conducted on postoperative QOL of patients with CHD, but results are inconsistent. Patients with CHD score similar to or better than their healthy peers in QOL questionnaires [26][27][28], but some studies argue that QOL might be compromised [15,29] The disagreement may have arisen from heterogeneity in subject demographics, the questionnaire used, specific CHD, or country of origin. Our study is the first to focus on the impact of different surgical methods on CHD repair.…”

Health-Related Quality of Life in Children and Adolescents with Simple Congenital Heart Defects before and after Transcatheter Intervention Therapy: A Single-Center Study

“…The HRQoL responses for children aged 8–18 years and their parents were scored on a 5-item Likert scale: 0 for never, 1 for almost never, 2 for sometimes, 3 for often, and 4 for always. 18 , 19) Scores ranged from 0 to 100 points. The total score for each dimension was calculated as the sum of the scores for all questions in that dimension divided by the number of questions for that dimension.…”