How the UK Renal Registry has improved the lives of renal patients

Transcription

1 How the UK Renal Registry has improved the lives of renal patients [is improving and will improve] Dr Fergus Caskey Medical Director of the UK Renal Registry NKF Annual Conference, Reading, 10th October 2015

2 UKRR history & accountability History: Established in 1995 First report % coverage 2007 NHS England Commissioners National Clinical Director Patient s

3 How does it work? Renal Units SRR Labs Haemodialysis Peritoneal dialysis Kidney transplantation Demographics Case-mix Laboratory data Scottish Renal Registry UKRR UK Renal Registry BAPN British Assn Paed Neph Funded on a capitation fee basis per patient per

4 RRT incidence and prevalence

5 Equity of access to treatment

6 Dialysis adequacy - URR

7 Frequency & duration

8 Patient survival by centre

9 Survival our patients are sicker 6 outliers 4 outliers 1 outliers 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. Retha Steenkamp is applying to HSCIC and equivalents in Wales and Northern Ireland for equivalent data for routine adjustment. Fotheringham NDT 2014

10 Infection data

11 Ethnicity and access to transplantation -34% -49% South Asians and Blacks have reduced chance of receiving a kidney transplant * includes age group ( 18-29, 30-49, 50-69); sex, cause of renal failure, year of RRT start ** fixed effect and clustering of dialysis centres

12 Ethnicity and access to waiting list Sam e Sam e Being of South Asian or Black descent is not associated with reduced chance of being waitlisted Udayaraj, Transplantation 2010

13 Summary of access to transplantation Udayaraj, Transplantation 2010

14 Why does this really matter now? 9th October 2015

15 National Programmes 1. Acute kidney injury in 1y and 2y care 2. Patient reported outcomes

16 National Programme 1. Acute Kidney Injury NHS England Patient Safety Steering Group AKI National Programme Board Risk Advisory Group Education Detection Algorithm Sub-Group Software Implementat ion SubGroup Best Practice in E-alert Group Expert Reference Group Interventio n Hydration Sub-Group Implementatio n Measurement

17 Acute Kidney Injury by stage Total number of cases = 62,436 ~23,000 individuals with AKI 25 of 135 labs in England AKI 1 AKI 2 AKI 3 AKI level 1 = 39,004 (62%) AKI level 2 = 11,575 (18%) AKI level 3 = 11,857 (19%) AKI stage 1 Sex (% Age (Median, M) IQR) (58.97, ) (58.38,

18 National Programmes 1. Acute kidney injury in 1y and 2y care 2. Patient reported outcomes

19 Patient reported outcomes NHS England Patient Safety Steering Group TP CKD National Programme Board Interventio n Measuremen t Co-chairs: Dr Richard Fluck Mr Jonathan Hope Implementati on Transforming Participation in CKD

20 Patient reported outcomes 1. Patient Activation: Can we intervene to give patients the skills, knowledge and confidence to be more involved in the management of their chronic kidney disease? 2. Quality of life and experience: Can we routinely capture it across all patient groups? CKD Dialysis Transplantation 5 units 5 units 13 units Measurement Workstream leads: Sabine van der Veer Claire Corps

21 Other stuf 1. Trials 2. RADAR and PatientView

22 ASSIST CKD Led by: Hugh Gallagher Michael Nation Dr Hugh Rayner, Heartlands

23 ASSIST CKD We have the historical rates of late referral already Labs introduce the graphs to GPs in controlled order 19 units (across 4 steps instead of 3) would detect a reduction in late referral from 18% to 11%, i.e. a relative reduction of 40%, absolute reduction of 7%. So, if in a renal unit starting 100 patients on dialysis each year, that would mean: 7 fewer patients presenting late each year

24 The UK Renal Registry Renal Units SRR Labs Haemodialysis Peritoneal dialysis Kidney transplantation Demographics Case-mix Laboratory data Scottish Renal Registry UKRR UK Renal Registry BAPN British Assn Paed Neph RPV Renal Patient View RaDaR Rare Diseases

25 Where can I find out more?! istry Patient summaries

26 The role of patients at the Registry History: Established in 1995 First report % coverage 2007 NHS England Commissioners National Clinical Director Patients Council Chaired by

27 Thank you for your attention Acknowledgements Thank you to all the UK renal centres for providing data to the UK Renal Registry. Thank you to all those who contributed to the writing of the 2014 annual report or participated in the Registry s National Programme initiatives and Study Groups! Thank you to all the people at the Registry, led by Ron Cullen, who work in the background to make all this possible. The Avon Gorge,