N DE LA MATA 1, V KHOU 1, J BYRNES 1, P KELLY 1, J HEDLEY 1, R MORTON 2, A WEBSTER 1,2
1Sydney School of Public Health, Faculty of Medicine and Health, Camperdown, Australia, 2NHMRC Clinical Trials Centre, Camperdown, Australia
Aim: To describe the patient journey after first listing and individual transitions on and off the kidney waitlist in Australia, regardless of receiving a kidney transplant or not.
Background: While people on the kidney transplant waitlist are counselled that their dialysis time contributes to their waiting time, they are not informed about what their individual waitlist experience might be like. Individual patient transitions on and off the waiting list are not well described.
Methods: We included all incident patients waitlisted for their first kidney transplant in Australia, 2006-2016, using ANZDATA. We described transitions from first waitlist entry to transplant, off-waitlist, continued waiting or death during follow-up. We estimated median time to these transition states and estimated probability in each transition state annually for 5 years.
Results:8,085 patients entered the kidney waitlist where 5,961(74%) received a transplant, 982(12%) remained waiting, 552(7%) moved off-waitlist and 590(7%) died before receiving a transplant. 3,433(42%) patients were removed from the waitlist at least once, of which 51% spent ≥6 months off-waitlist. Median time from waitlist to transplant increased with number of times off-waitlist, from 0.6 years(IQR:0.2-1.5) in patients never off-waitlist to 3.6 years(IQR:2.2-5.5) in patients with ≥3 times off-waitlist. At 1-year, the probability of transplant was 34%, active on waitlist was 52%, off-waitlist was 12% and death was 2%. At 5-years, this increased to 66% transplanted, 8% active on waitlist, 14% off-waitlist and 12% died.
Conclusion: The individual experience on transplant waiting list was not straightforward, where many patients were off-waitlist at least once and had longer time to transplant. Our findings will aid in counselling patients and informing clinicians about expected outcomes once entering the waitlist.
Nicole De La Mata is an early career researcher and biostatistician at the Sydney School of Public Health. Her current research has leveraged data linkage to tap into existing health data, creating large patient databases to evaluate patient outcomes and influence health policy. Her area of focus is improving health service delivery and health outcomes in people with kidney failure, living kidney donors and organ transplant recipients.