Clinical kidney journal
Diagnostic disclosure, communication quality, and patient experience in autosomal dominant polycystic kidney disease
Par Djadda M, Haidar F, Guirchoun P et 3 autres.
Contenu en anglais
Résumé
Background
In autosomal dominant polycystic kidney disease (ADPKD), the age and circumstances of diagnosis, the quality of initial disclosure, and how patients experience it have not been systematically described.
Methods
Cross-sectional web-based survey in France (2019-2024) of adults with self-reported ADPKD recruited via patient organizations. Participants reported diagnostic context, who first disclosed the diagnosis, perceived information quality, and rated tact and overall experience on 0-5 scales. Primary outcomes were poor tact and very negative diagnostic experience (scores 0-1). Multivariable models included prespecified covariates tailored to each outcome.