2013 Annual Report highlights and new directions for the Registry Dr Fergus Caskey Medical Director, UK Renal Registry Good morning and thank you for the opportunity to speak this morning. As the title slide shows I am going to be talking through some of the highlights of this years annual report- 2011 data UK Renal Registry 2014 Annual Audit Meeting 1 1

Annual Report 2013 Published December 2013 Second report in 2013 Data up to 31st December 2012 April: extract 1st quarter April-June: data extracts obtained & validated July: database closed July-August: dataset cleaned; stats performed Sept-Nov: chapters written, edited & formatted December: published Second report in 2013

Annual Report 2013 Informatics, data management and programming Fiona Braddon, Shaun Mannings, Fran Benoy-Deeney, Lynsey Billett, Paul Dawson, Jo Wilson, Matthew Brealey, George Swinnerton Authors and editors† Anna Casula, Julie Gilg, David Pitcher, Rishi Pruthi, Ani Rao, Catriona Shaw, Retha Steenkamp Victoria Briggs, Fergus Caskey, Lisa Crowley, Andrew Davenport, Anne Dawnay, Ken Farrington, Terry Feest, Richard Fluck, Damian Fogarty, Iain McPhee, Rommel Ravanan, Paul Roderick, Manish Sinah, Martin Wilkie, Andrew Williams Business Ron Cullen, Hilary Doxford, Steph Shearn, Laura Woodward † First authors and last authors

Terry Feest Award Dr Andrew Williams Swansea Involved in Registry from very start (including pilot) Helped set up the Welsh data validation exercise Contribution to Registry Committee and Study Groups Editorial support for annual report Championing local high quality data

RRT incidence 1980-2012, by age Gilg J. Chapter 1. UKRR Annual Report 2013

RRT incidence 1990-2012, by country Gilg J. Chapter 1. UKRR Annual Report 2013

eGFR at start of RRT Restricted to centres reporting since 2003 Gilg J. Chapter 1. UKRR Annual Report 2013

Trends in late presentation Restricted to centres with 75+ completeness Gilg J. Chapter 1. UKRR Annual Report 2013

Late presentation in 2011/2012 32% 7% Late presentation < 90 days Restricted to centres with 75+ completeness Gilg J. Chapter 1. UKRR Annual Report 2013

Transplant wait listing prevalence by age by country Pruthi R. Chapter 4. UKRR Annual Report 2013

Access to transplant (adjusted HR) Ethnicity Access to transplant (adjusted HR) waiting list transplant living donor transplant White ref ref ref S Asian 1.10 (0.97-1.24) 0.74 (0.65-0.85) 0.66 (0.45-0.96) Black 0.95 (0.79-1.14) 0.66 (0.49-0.87) 0.40 (0.21-0.73) Udayaraj U. Chapter 6. UKRR Annual Report 2013

Survival Trends in 1 year after 90 day survival Pruthi, R. Chapter 8. UKRR Annual Report 2013

Survival Adjusting for comorbidity with HES data “The addition of a combination of 16 comorbid conditions present at the start of RRT reduced the number of centres with worse than expected survival to one.” 6 outliers Age sex SES, ethnicity and year of start 16 comorbs from HES 4 outliers 1 outliers Fotheringham NDT 2014 13

Survival Monthly hazard of death

Monthly hazard of death Survival Monthly hazard of death

Survival "The Registry now asks all nephrologists to complete the timeline as accurately as possible, recording the date of first dialysis or haemofiltration and, separately, the date on which the patient was deemed to be chronic. This will allow us to distinguish between patients who have an acute start and those whose start on RRT was planned.“ UKRR 2009

Dialysis Access Audit England, Wales and Northern Ireland % PD catheter failures in 1 year by centre Referred < 90 days Briggs, V. Chapter 14. UKRR Annual Report 2013

Reported infections England only Trends in MRSA Funnel plot of MRSA rates Crowley L. Chapter 15. UKRR Annual Report 2013

Current and new directions

Core work Data timeliness Data quality Renal Data Collaboration 2013 database closed end June 2014 for report published December 2014 Three sites significantly behind schedule Data quality Plans for fixed term appointment to establish source data verification Sensitivity and specificity for core data items Benchmarking Research Renal Data Collaboration Proof of concept completed, contract signed with InterSystems, training begun

Core work Dataset Patient Council Beyond ESRD Version 3.30 end July 2014 PD dataset Then vascular access dataset Patient Council Fiona Loud agreed to chair, advertised for potential members, interviews May 2014, first meeting July 2014 Beyond ESRD Obtained Section 251 exemption for CKD2+ and dialysis dependent AKI, June 2013 Applying for Section 251 exemption for any AKI

Core work Specialist Commissioning Dashboard Asked by Specialist Commissioners to take over quarterly Dashboard data collection Four indicators PD peritonitis rate Adequacy of Haemodialysis Dose Rate of Staph Aureus bacteraemia in patients treated with chronic HD Access to Transplant listing

UKRR accountability NHS England Commissioners National Clinical Director Patients

Major projects Acute Kidney Injury Partnership with NHS England over 2 years Six workstreams – risk, education, detection, intervention, implementation, measurement Registry leading on measurement Launch meeting 8th April 2014 Inclusion of Wales, Scotland and Northern Ireland

Major projects Patient participation Funding awarded by NHS England (Patient Experience) Feb-March 2014 Board to be establish to oversee work around: Patient reported outcome measures (HRQoL) Patient reported experience measures Patient activation measures Quality of shared decision making Inclusion of Wales, Scotland and Northern Ireland

The PROMs Pilot - DRAFT 10 sites All dialysis patients – HD (in centre/ satellite/ home), PD PROM/ PREM collected quarterly for 12 months Paper vs electronic Local versus central PROM: EQ-5D POS-s renal (symptoms) ? Recovery time question (for HD) PREM: Scottish Renal Patient Experience Questionnaire Translation Qualitative evaluation Health economic evaluation

PROMs – a European consensus “Consensus meeting on collecting quality of life and patient experience data in renal registries in Europe” ERA-EDTA Registry QUEST funded Bristol 23rd June 2014 Delegates invited from all interested renal registries in Europe

UKRR past present and future work Haemodialysis Peritoneal dialysis Demographics Case-mix Laboratory data PROMs & PREMs Activation & QSDM Kidney transplantation AKI dialysis dependent AKI in 1y & 2y care CKD 2-4 in 2y care CKD 2-4 in 1y & 2 care

Research Research methods Study Group Appointment of Tony Wing Fellow First meeting March 2014 Solve analytical problems from dialysis and transplant study groups Plan high impact analyses Appointment of Tony Wing Fellow BKPA funded fellow appointed March 2014 to start August 2014 Data linkage opportunities Revised work proposal forms soon on UKRR website Now three levels (including no analysis input from UKRR)

Research Current PhD Students A different model in the future? Dr Claire Castledine Explaining regional variation in renal service provision in the UK PhD awarded Retha Steenkamp Multiple imputation and prognostic survival modelling Submitted Dr Catriona Shaw CKD outcomes with MINAP / NICOR linkage (London) Dr Rishi Pruthi Qualitative research in the ATTOM Study (Southampton) Dr Ani Rao Mixed methods alongside EQUAL (pre dialysis CKD in the elderly) (Bristol) A different model in the future?

Any questions?