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

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.