Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations—A Scoping Review

Scoping review examines health-related quality of life in parents of children with rare congenital malformations requiring surgery. Analysis of four European studies (2014-2018) reveals limited evidence with small sample sizes and inconsistent findings, highlighting need for larger longitudinal studies using both generic and disease-specific instruments across all family members.