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Quality of life of children born with a congenital heart defect

Published:January 13, 2022DOI:https://doi.org/10.1016/j.jpeds.2022.01.003

      ABSTRACT

      Objectives

      To identify subgroups with a congenital heart defect (CHD) at risk of health-related quality of life (QoL) impairment at 8 years of age according to their medical and surgical management (MSM)

      Study design

      From a prospective population-based cohort study, 598 with CHD were subdivided according to their medical and surgical management: 1) CHD followed-up in an outpatient clinic, 2) Complete repair before 3 years, 3) Complete repair after 3 years, or 4) Palliative repair, 5) CHD with spontaneous resolution (reference subgroup). Self- and parent-reported QoL were measured using the PedsQL4.0 (range 0-100) at 8 years of age. Multivariable regression analysis and Cohens effect size were used to compare the outcomes across the CHD groups.

      Results

      Self and parent-reported QoL scores for the palliative repair subgroup were lower (β = - 2.1 [CI95%: -3.9; -0.2] and β = -16.0 [CI95%: -22.4; -9.5], respectively) with a large effect size δ = -0.9 [CI95%: -1.4: -0.4] and δ = -1.3 [CI95%: -1.8: -0.7], respectively. Parent-reported QoL score for the complete repair after 3 years subgroup was lower (β = -9.2 [CI95%: -15.0; -3.5]) with a large effect size (δ = -0.9 [CI95%: -1.4: -0.5]). Self-reported QoL score for the complete repair before 3 years subgroup was lower (β = -1.3 [CI95%: -1.9; -0.6]) with a small effect size (δ = -0.4 [CI95%: -0.6 -0.2]).

      Conclusion

      QoL of children with CHD who experienced a hospital intervention is reduced at 8 years of age. The age of the last cardiac intervention might influence QoL at 8 years of age.

      Key words

      Abbreviationslist:

      CHD (congenital heart defects), CI (Confidence Interval), EPICARD (EPIdémiologie des CARDiopathies congénitales), PedsQL4.0 (Pediatric Quality of Life Inventory Version 4.0), QoL (Health-related quality of life), TGA (Transposition of the great arteries)
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