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

Aims: We elicited input from patients on their experience getting a chronic kidney disease (CKD) diagnosis to use for optimizing current CKD education interventions. Methods: We performed structured one-on-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. Results: 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. Conclusions: 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.