Longitudinal behaviour of children with complex congenital heart disease from preschool to adolescence

Q: What are the key findings of this study?

In children with complex congenital heart disease, higher child IQ (OR 1.1) and better maternal mental health (OR 0.9) at 4 years of age predicted normal behavioural trajectories into adolescence.

Q: What is the clinical evidence from this study?

Study design: Cohort. Population: Complex congenital heart disease (n=137). Intervention: Higher child IQ at 4 years vs. Lower child IQ. Primary outcome: Normal behavioural trajectory across ages (OR 1.1, p=0.020).

Q: What does this research mean for the field?

In children with complex congenital heart disease, higher child IQ and better maternal mental health at preschool age predict normal behavioral trajectories across ages, while a significant subset (26%) develop increasing behavioral problems by adolescence. Novelty: ClaimNovelty.INCREMENTAL. Consensus alignment: ConsensusAlignment.NEUTRAL.

Melanie Ehrler; Jessica Fervença Ramos; Flavia M. Wehrle; Emanuela R. Valsangiacomo Buechel; Ingrid A. Beck; Beatrice Latal; Markus A. Landolt

doi:10.1038/s41390-026-04839-2

March 5, 2026Pediatric ResearchOpen Access

Longitudinal behaviour of children with complex congenital heart disease from preschool to adolescence

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Key result

Higher early IQ and maternal mental health predict normal long-term behavioral trajectories in cCHD children.

OR 1.1
P=0.020
n=137

Why the study?

Behavioural outcomes in patients with complex congenital heart disease are highly heterogeneous both between patients and over time.

Key Points

To identify longitudinal behavioural trajectories and their early predictors in children with complex congenital heart disease from preschool to adolescence.
Longitudinal cohort study of 137 children with complex congenital heart disease followed across four time points at 4, 6, 10, and 13 years of age.
Behavioural outcomes were assessed using parent-reported Strengths and Difficulties Questionnaire (SDQ) z-scores adjusted for German norms, with missing data imputed via MICE.
Latent class growth analysis (LCGA) was applied to model and classify distinct behavioural trajectories over time.
LCGA identified three distinct trajectories: normal behaviour across ages (55%, n=76; slope β=0.01 per year, p=0.279), increasing behavioural problems (26%, n=36; slope β=0.12 per year, p<0.001), and decreasing behavioural problems (18%, n=25; slope β=-0.12 per year, p<0.001).
At age 13, children had significantly higher total difficulties (median z=0.28, IQR -0.64 to 1.01, p=0.040, r=0.22; 26% clinically relevant, p=0.009), emotional problems (median z=0.37, IQR -0.19 to 1.01, p<0.001, r=0.40; 26% clinically relevant, p=0.004), and hyperactivity (median z=0.18, IQR -0.48 to 0.87, p=0.045, r=0.22) compared to normative data.
At age 6, emotional problems were elevated relative to norms (median z=0.16, IQR -0.52 to 0.77, p=0.010, r=0.24; 24% clinically relevant, p=0.020), while higher preschool IQ and better maternal mental health predicted favourable long-term behavioural paths.

Study Design

Type

Cohort (n=137)

Multicenter

No

Structured PICO

P

Population

137 children with complex congenital heart disease who underwent cardiopulmonary bypass surgery in infancy, followed longitudinally from preschool to adolescence.

C

Comparator

Normative data (German norms for SDQ, Swiss norms for KIDSCREEN-10, British norms for impact score)

O

Outcome

Behavioural trajectories assessed using the parent-reported Strengths and Difficulties Questionnaire (SDQ) total difficulties score from preschool (4 years) to adolescence (13 years)patient reported

Main Result

Odds Ratio: 1.1

p-value: p=0.020

A subgroup of children with complex congenital heart disease develops increasing behavioural problems over time, highlighting the need for continuous neurodevelopmental follow-up and family-centered care.

Limitations

Parent reports were used exclusively, lacking additional sources of information from teachers or behavioural observations.
The SDQ is a screening tool whose brevity may not capture the full range of a child's behavioural problems.
The LCGA entropy of 0.74 was below the cut-off of 0.8, indicating only moderate to good classification quality.
Missing data, particularly at the last follow-up, required estimation using multiple imputation by chained equations (MICE).
Parent reports were used exclusively without teacher reports or behavioural observations
Questionnaires were filled in by mothers and fathers inconsistently across follow-ups in 16% of cases
SDQ is a brief screening tool that may not capture the full range of a child's behavioural problems

Implication

Supports longitudinal neurodevelopmental and family-centered care in complex CHD; extends evidence on behavioral trajectories to adolescence.

Abstract

Behavioural outcomes in patients with complex congenital heart disease (cCHD) are highly heterogenous both between patients and over time. This study identified distinct subgroups of behavioural trajectories, including one with increasing difficulties over time, one with decreasing difficulties, and one without persistent problems. Children with cCHD with behavioural problems also frequently require special educational needs. Higher child IQ and better maternal mental health during preschool predicted favourable behavioural outcomes over time. Repeated neurodevelopmental follow-ups into adolescence and the implementation of family-centred care are key to identify at-risk individuals and support long-term outcomes in cCHD.

Discussion

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Cite This Study

Ehrler et al. (2026) conducted a cohort in Complex congenital heart disease (n=137). Higher child IQ at 4 years vs. Lower child IQ was evaluated on Normal behavioural trajectory across ages (OR 1.1, p=0.020). In children with complex congenital heart disease, higher child IQ (OR 1.1) and better maternal mental health (OR 0.9) at 4 years of age predicted normal behavioural trajectories into adolescence.

synapsesocial.com/papers/69ad122be7e9681137aa8950 https://doi.org/10.1038/s41390-026-04839-2

Topics

Congenital heart disease adults

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Longitudinal behaviour of children with complex congenital heart disease from preschool to adolescence

Key Points

Study Design

Structured PICO

Main Result

Limitations

Implication

Abstract

Discussion

Cite This Study

Topics

Longitudinal behaviour of children with complex congenital heart disease from preschool to adolescence

Key Points

Study Design

Structured PICO

Main Result

Limitations

Implication

Abstract

Discussion

Cite This Study

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