Choosing dialysis modality: decision making in a chronic illness context

Background Patients with chronic kidney disease (CKD) are encouraged to make an informed decision about dialysis. Survival rates for dialysis are equivalent yet there is wide variation in peritoneal dialysis uptake in the adult UK population. It is unclear how much is attributable to variations in patients' preferences. Kidney function usually declines over months and years; few studies have addressed how a chronic illness context affects choice. This study describes patients' decision making about dialysis and understands how the experience of CKD is associated with treatment choice. Method Survey employing interview methods explored 20 patients' views and experiences of making their dialysis choice. Data were analysed using thematic framework analysis to provide descriptive accounts of how patients experienced their illness and made treatment decisions. Results Patients talked about challenges of living with CKD. Patients were provided with lots of information about treatment options in different formats. Patients did not distinguish between different types of dialysis and/or have an in-depth knowledge about options. Patients did not talk about dialysis options as a choice but rather as a treatment they were going to have. Conclusion Most patients perceived their choice as between 'dialysis' and 'no dialysis'. They did not perceive themselves to be making an active choice. Possibly, patients feel they do not need to engage with the decision until symptomatic. Despite lots of patient information, there were more opportunities to encounter positive information about haemodialysis. A more proactive approach is required to enable patients to engage fully with the dialysis treatment options.