# Bridging clinical care and lived experience: early implementation of longitudinal health-related quality of life monitoring in congenital heart disease

## TL;DR

This study explores how to track quality of life in children with heart defects over time, aiming to improve long-term care through patient-reported outcomes.

## Contribution

The study introduces a pragmatic model for integrating longitudinal health-related quality of life monitoring into routine pediatric cardiology care.

## Key findings

- Early HRQoL data show high scores in younger children with a decline during adolescence.
- Key facilitators include automation, interdisciplinary collaboration, and iterative process adaptations.
- Barriers include limited staff resources and partial IT integration.

## Abstract

Congenital heart defects (CHD) are the most common congenital malformations, and, although survival rates now exceed 90%, children remain at risk for long-term psychomotor, cognitive, and psychosocial difficulties. Routine integration of patient-reported outcome measures (PROMs) into pediatric cardiology offers the potential to detect vulnerabilities early, guide preventive interventions, and facilitate patient- and family-centered care. However, practical implementation in routine settings remains challenging.

This pilot study describes the early feasibility and implementation experience, and process adaptations for embedding the Pediatric Quality of Life Inventory™ Cardiac Module (PedsQL CM) into routine pediatric cardiology care, with a focus on the development of a pragmatic implementation model, aiming to enable longitudinal health-related quality of life (HRQoL) monitoring in children with CHD following surgical or catheter-based interventions.

We are conducting a prospective, single-center, non-interventional study at the University Medical Center Freiburg, enrolling children aged 2–17 years undergoing cardiac surgery or catheterization. The PedsQL CM, available in eight languages in age-appropriate self- and parent-proxy versions, is administered at baseline (hospital admission) and at 3, 6, 9, and 12 months post-intervention. Surveys are implemented in REDCap and distributed via QR codes and automated invitations. Clinical data (diagnosis, intervention details, perioperative parameters) are extracted from the institutional research database for linkage with HRQoL trajectories. Implementation process data are collected systematically, capturing feasibility, acceptability, barriers, and facilitators.

By mid-study, 77 families have been enrolled. Key facilitators include the visible study team presence, iterative adaptations (e.g., a user-friendly guidance document, filter questions), automation, and interdisciplinary psychosocial team involvement. Barriers comprise limited staff resources, partial IT integration, and variable clinician engagement. Early HRQoL data reflect evidence-based patterns, with generally high scores in younger children and a downward trend during adolescence.

Embedding systematic, longitudinal HRQoL assessment in pediatric cardiology is feasible but requires sustained institutional commitment, robust workflows, and interdisciplinary collaboration. Disease-specific PROMs such as the PedsQL CM provide clinically meaningful insights that support proactive, individualized care. Multicenter collaboration and the extension of PROM pathways across pediatric subspecialties will be key to addressing coverage gaps, optimizing lifelong outcomes, and establishing best practice frameworks to integrate PROMs.