Transcript Document

Access to transplant in the UK The ATTOM study

Dr Rommel Ravanan [email protected]

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

Figure 1 Percentage listed prior to start of RRT or within 2yrs of starting dialysis

(Excluding centres with <10 patients on RRT) 90 80 70 60 50 40 30 20 10 0 Tx centre vs not: OR 0.9 (0.82 to 0.99) 50 100 Risk-adjusted centre rate 95% Lower CL 99.8% Lower CL 150 200 250 Number of patients 300 National rate 95% Upper CL 99.8% Upper CL 350 400 450 500

Figure 3

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Percentage transplanted (LKD/DCD) within 2yrs of registration

(Excluding centres with <10 patients waitlisted) 50 40 30 20 10 Risk-adjusted centre rate 95% Lower CL 99.8% Lower CL National rate 95% Upper CL 99.8% Upper CL Tx centre vs not: OR 0.69 (0.60 to 0.79) 0 0 20 40 60 80 100 120 140 160 Number waitlisted 180 200 220 240 260 280

Figure 4 Median time to waitlisting

(Excluding centres with <10 patients waitlisted) 1400 1200 1000 800 600 400 200 Unadjusted centre rate National rate 95% Upper CL 99.8% Upper CL Unadjusted centre rate 95% Lower CL 99.8% Lower CL 654 days 0 0 20 40 60 80 100 120 140 160 180 Number waitlisted 200 220 240 260 280 300 320 The centre represented by an unfilled symbol has its final event time as the plotting position as the median time could not be estimated

ATTOM A

ccess to

T

ransplantation and

T

ransplant

O

utcome

M

easures

The Scottish Renal Registry

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

The ATTOM group

Cambridge

Andrew Bradley Chris Watson Ms Ruth Summers (NHS manager)

Edinburgh

Gabriel Oniscu John Forsythe

SRR

Wendy Metcalfe

Bristol

Charlie Tomson Chris Dudley Rommel Ravanan

UKRR

Terry Feest / Damian Fogarty

NHSBT

Rachel Johnson

Royal Holloway

Prof Clare Bradley (PROMs expertise)

LSHTM

Prof John Cairns (Health economic expertise)

Southampton University

(Epidemiology & Qualitative research expertise) Prof Paul Roderick, Dr Gerry Leydon +

Ethics & patients representatives

ATTOM Cohort 1

Incident transplant patients 1 in the UK n = 225 0

ATTOM Cohort 2

Prevalent wait-listed patients in the UK n = 225 0 Functioning Transplant Death Return to dialysis Transplant Death or removal from the list Remain on the transplant list

ATTOM - how

• Embedded research nurses in 20 transplant centres • 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

• Local PIs for R&D approvals (~May 2011) • Facilitate local nurse recruitment (~August/September 2011) • Data clarifications (if needed) for nurses • Participate in semi-structured interviews / answer questionnaires (for the qualitative work stream)

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 to your NHS trust

• 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

Contact for information

[email protected]

[email protected]