Development and Validation of the CHDSI Questionnaire: A New Tool for Measuring Disease-Specific Quality of Life in Children and Adolescents with Congenital Heart Defects.

ABSTRACT: Background and Objectives: Congenital heart defects (CHD) affect around 1% of the population, making them the most common congenital disease worldwide. Thanks to advances in treatment, over 90% of affected children are able to reach adulthood, shifting focus to long-term outcomes such as disease-specific quality of life (DsQoL). To date, there has been no validated, standardized instrument for assessing DsQoL in young German CHD patients. This study introduces the Congenital Heart Disease Specific Inventory (CHDSI), the first freely available German-language instrument for measuring DsQoL in children and adolescents with CHD. Materials and Methods: The CHDSI was developed at the German Heart Center Munich in collaboration with affected children and adolescents and validated n

SUBMITTER: Helm PC 

PROVIDER: S-EPMC12297989 | biostudies-literature | 2025 Jul

REPOSITORIES: biostudies-literature