Patient INformation about Options for Treatment (PINOT): a prospective national study of information given to incident CKD Stage 5 patients

Abstract

Background: Informed decision-making requires the presentation of all possible courses of action; however, it is unclear what proportion of Stage 5 chronic kidney disease (CKD) patients are routinely informed of all their treatment options. The aim of this study was to determine the effect of patient and unit characteristics on the type and timing of information provided.

Methods: A prospective national multi-centre study of information was given to incident pre-emptive transplant, dialysis and conservatively managed patients in Australian renal units, over a 3-month period.

Results: Sixty-six of 73 renal units participated in the study. Seven hundred and twenty-one incident CKD Stage 5 patients including 102 who chose not to dialyse were identified. Of these, 603 (84%) were presented with information about their options prior to commencing treatment. Three quarters (n = 543) were presented with home dialysis, one-third (n = 230) pre-emptive transplantation and 65% (n = 470) were informed about conservative care as an option. Patients were more likely to receive information prior to commencing treatment if they were known to a nephrologist for more than 3 months (OR 7.29, 95% CI 3.86-13.79) or were treated in small units with < 100 dialysis patients (OR 2.40, 95% CI 1.26-4.60). The mean estimated glomerular filtration rate at the time information was first presented was 13.3 mL/min/1.73 m(2) (95% CI 12.7-13.8) and mean serum creatinine was 449 μmol/L (95% CI 431-467).

Conclusions: Most Australian patients were informed of their treatment options prior to starting treatment, albeit in late stage CKD. Earlier education and support for informed decision-making may help optimize the uptake of pre-emptive transplantation and home dialysis therapies.