Access to transplant in the UK The ATTOM study Dr Rommel Ravanan On behalf of ATTOM investigators

Access to transplant in the UK Unexplained between centre variation in access to the waiting list, time taken for activation and receipt of a transplant once activated* Patient and/or unit specific variables that explain such variation not clear * BMJ 2010;341:c3451

Percentage listed prior to start of RRT or within 2yrs of starting dialysis (Excluding centres with <10 patients on RRT) Figure 1 Non Tx vs Tx centre: OR 0.9 (0.82 to 0.99)

Percentage transplanted (LKD/DCD) within 2yrs of registration (Excluding centres with <10 patients waitlisted) Figure 3 Non Tx vs Tx centre: OR 0.69 (0.60 to 0.79)

Median time to waitlisting (Excluding centres with <10 patients waitlisted) The centre represented by an unfilled symbol has its final event time as the plotting position as the median time could not be estimated Figure days

Access to ATTOM Transplantation and TransplantOutcomeMeasures The Scottish Renal Registry

Survival on dialysis and after transplantation Health economics QoL on dialysis and transplantation ATTOM Organ Allocation Access to transplantation

The ATTOM group Cambridge Bristol Andrew BradleyCharlie Tomson Chris WatsonChris Dudley Ms Ruth Summers (NHS manager)Rommel Ravanan EdinburghUKRR Gabriel OniscuDamian Fogarty John Forsythe SRRNHSBT Wendy MetcalfeRachel Johnson Royal HollowayLSHTM Prof Clare Bradley (PROMs expertise)Prof John Cairns (Health economic expertise) Southampton University (Epidemiology & Qualitative research expertise) Prof Paul Roderick, Dr Gerry Leydon + Ethics & patients representatives

ATTOM Cohort 1

Prevalent wait-listed patients in the UK n = Transplant Death or removal from the list Remain on the transplant list Incident transplant patients 1 in the UK n = Functioning TransplantDeathReturn to dialysis ATTOM Cohort 2

ATTOM - how Embedded research nurses in 20 transplant centres (covering Tx centre + feeder non-Tx units) Nurses record clinical phenotype from case notes/IT systems Administer/collect PROMs questionnaires Parallel qualitative assessment of centre practice patterns Outcome data by linking ATTOM database to registries

ATTOM – help needed Comorbidity data clarification (if notes entry not clear) Participate in semi-structured interviews / answer questionnaires (for the qualitative work stream) Observational study only. No intervention of any kind planned Be nice to Local ATTOM research nurses / and Dr Rishi Pruthi (UKRR clinical fellow)!

ATTOM - output What’s in it for the units? Accurate benchmarking of unit level co-morbidity burden / transplant related resource availability Share ‘best practice’ ‘Free’ near complete data returns to UKRR/SRR NIHR portfolio income What’s in it for the renal community in the UK? ‘Real world’ UK clinical evidence base to drive UK clinical policy Survival probability model to improve equity of access Understanding PROMs in renal patients Permanent complete dataset for many analyses by UKRR/SRR Not just transplant stuff – access, survival on dialysis and much more

Any questions