A diagnosis of chronic kidney disease: despite fears patients want to know early

We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. We performed structured oneon-one patient interviews. Interviews were recorded, transcribed, and coded using modified grounded theory. Participants had CKD, were not on dialysis, and were recruited from general nephrology practices. 49 patients enrolled from January to October 2014. Interviews revealed four major themes: 1. Reaction to diagnosis - patients described emotional reactions and subsequent behavior changes (152 statements); 2. Timing of diagnosis - patients described how they were told about their diagnosis and expectations of when a person should be told (149 statements); 3. Mediators in diagnosis delivery - patients discussed things that helped or hindered understanding and acceptance of their diagnosis (64 statements), and 4. Perceptions of diagnosis terminology - patients discussed perceptions about diagnostic terms (e.g., "chronic kidney disease") (91 statements). Cross-sectional study design and setting limit interpretation of causality and generalizability. Patients experience fear but prefer early diagnosis communication. More work is needed to define evidence-based guidelines for diagnosis messaging across the spectrum of care.