The Renal Association
UK Renal Registry Southmead Hospital Southmead Road Bristol BS10 5NB UK Telephone þ 44 (0) 117 323 5665 Fax þ 44 (0) 117 323 5664
Email
[email protected] Web site www.renalreg.org Deputy Director Chris Maggs General Manager Hilary Doxford Systems Manager David Bull Project Manager Sue Shaw
Clinical Informatics Manager Fiona Braddon Senior Clinical Data Manager Paul Dawson Clinical Data Managers Lynsey Billet Fran Benoy-Deeney Sarah Wood Programmers Matthew Brealey Andy Langdon
UK Renal Registry Director:
Dr D Ansell
Accounts:
MCI Ltd
The UK Renal Registry Committee Chairman:
Dr C Tomson
Secretary:
Dr A J Williams
Members:
Dr G Bell Dr C Byrne Dr Fergus Caskey Dr A Chaudhry Ms H Doxford Dr R Fluck Dr I John Prof C Maggs Dr A McLean Prof P Roderick Dr M Wilkie Ex Officio Renal Association: Prof P Mathieson (President), Dr L Harper (Secretary) Prof J Feehally (Management Board Chair) Dr K Harris (Clinical Vice President) Northern Ireland: Dr D Fogarty Scotland: Dr W Metcalfe Wales: Dr K Donovan British Association of Paediatric Nephrology: Dr C Inward British Transplantation Society: Dr L Marson, Dr I MacPhee Association for Clinical Biochemistry: Dr A Dawnay Department of Health: Mr C Cox Royal College of Nursing: Ms M Goolam Health Commissioners: Mrs J Scott Patient Representative (NKF): Mr R Smith
Retired Members 2009:
Prof S Davies, Dr C Dudley, Dr J Harper, Mr N Mamode, Ms A MacLeod, Dr D Thomas, Mrs N Thomas iii
Contents Chapter 1
Summary of findings in the 2009 UK Renal Registry Report Charles RV Tomson
1
Chapter 2
Introduction Charles RV Tomson and Christopher Maggs
3
National developments Clinical information systems used in UK renal centres Completeness of returns from UK renal centres Interpretation of centre-specific comparisons The role of the UKRR in improvement and the identification of underperformance Information governance Paediatric Registry Peer-reviewed publications since the last Annual Report
3 4 4 4 6 6 7 7
UK ESRD Incident Rates in 2008: national and centre-specific analyses Catherine Byrne, Daniel Ford, Julie Gilg, David Ansell and John Feehally
9
Introduction UK Renal Registry coverage 1 Geographical variation in acceptance rates Methods Results 2 Demographics and clinical characteristics of patients accepted onto RRT Methods Results Age Gender Ethnicity Primary renal diagnosis First established treatment modality Renal function at the time of starting RRT 3 Late presentation (referral) of incident patients Introduction Methods Results Late presentation by centre and year Time referred before dialysis initiation in the 2008 incident cohort Age and late presentation Gender and late presentation Ethnicity, social deprivation and late presentation Primary renal disease and late presentation Modality and late presentation Comorbidity and late presentation Haemoglobin and late presentation eGFR at start of RRT and late presentation
9 10 10 10 10 17 17 19 19 22 22 22 28 31 34 34 34 34 34 37 37 37 37 37 38 38 38 38
Chapter 3
v
Chapter 4
Chapter 5
vi
Survival of incident patients Summary
38 38
UK ESRD Prevalent Rates in 2008: national and centre-specific analyses Catherine Byrne, Retha Steenkamp, Clare Castledine, David Ansell and John Feehally
41
Introduction Methods Results Prevalent patient numbers and changes in prevalence Prevalent patients by RRT centre Changes in prevalence Prevalence of RRT in Primary Care Trusts (PCT) in England or Local Authority (LA) areas in Wales, Scotland (Council Areas) and Northern Ireland (District Councils) Factors associated with variation in standardised prevalence ratios in PCTs in England, Local Authorities in Wales, Scotland and Northern Ireland (PCT/LA) Case mix in prevalent RRT patients Summary
41 42 42 42 43 43 47 48 48 67
Demographic and Biochemistry Profile of Kidney Transplant Recipients in the UK in 2008: national and centre-specific analyses Lynsey Webb, Anna Casula, Rommel Ravanan and Charles RV Tomson
69
Introduction Transplant activity, waiting list activity and survival data Introduction Method Results Conclusions Transplant demographics Introduction Methods Results and discussion Age and gender Primary renal diagnosis Ethnicity Comorbidity Clinical and laboratory outcomes Introduction Methods Results and discussion Post-transplant eGFR in prevalent transplant patients eGFR in patients one year after transplantation Haemoglobin in prevalent transplant patients Haemoglobin in patients one year post-transplantation Blood pressure in prevalent transplant patients Blood pressure in patients one year after transplantation Cholesterol in transplant patients Bone mineral metabolism in transplant patients Serum phosphate Serum calcium
69 70 70 70 70 70 71 71 71 71 71 72 77 77 81 81 83 84 84 86 89 90 90 92 94 95 96 96
Serum parathyroid hormone concentration Analysis of prevalent patients by CKD stage Introduction Methods Results and Discussion Causes of death in transplant recipients Introduction Methods Results and discussion Causes of death in prevalent RRT patients in 2008 by modality and age Chapter 6
Chapter 7
Comorbidities and Current Smoking Status amongst Patients starting Renal Replacement Therapy in England, Wales and Northern Ireland from 2003 to 2008: national and centre-specific analyses Fergus Caskey, Lynsey Webb, Julie Gilg and Damian Fogarty
99 99 99 99 99 100 100 100 100 100
103
Introduction Methods Results Completeness of comorbidity returns from each participating centre Prevalence of multiple comorbidity Frequency of each comorbid condition Prevalence of comorbidity by age band Prevalence of comorbidity by ethnic origin Prevalence of comorbidity amongst patients with diabetes mellitus Haemoglobin concentration at the time of starting RRT and comorbidity Late presentation and comorbidity Renal function at the time of starting RRT and comorbidity Age and comorbidity in patients by treatment modality at start of RRT Comorbidity and subsequent activation on deceased donor transplant waiting list (TWL) Comorbidity and survival within 90 days of starting RRT Comorbidity and survival 1 year after 90 days of commencing RRT Discussion
104 104 106 106 106 106 108 108 109 111 111 111 111 111 112 113 114
Survival and Causes of Death of UK Adult Patients on Renal Replacement Therapy in 2008: national and centre-specific analyses David Ansell, Paul Roderick, Retha Steenkamp and Charles RV Tomson
117
Introduction Methods Definition of the date renal replacement therapy started Methodology for incident patient survival Methodology for prevalent patient survival Methodology of causes of death Methodology of median life expectancy (life table calculations) Methodology for comparing mortality in prevalent RRT patients with the mortality in the general population Results of incident (new RRT) patient survival Comparison with audit standards Comparison of survival between UK countries Modality
118 118 118 119 119 120 120 120 120 120 121 122
vii
Age Change in survival on renal replacement therapy by vintage Analysis of centre variability in 1 year after 90 days survival Analysis of the impact of adjustment for comorbidity on the 1 year after 90 day survival Results of prevalent patient survival analyses One year survival of prevalent dialysis patients by centre The 2008, one year death rate in prevalent dialysis patients by age band One year survival of prevalent dialysis patients by UK country from 1997–2008 One year survival of prevalent dialysis patients with a primary diagnosis of diabetes from 2000–2008 Death rate on RRT compared with the UK general population Results of analyses on causes of death Data completeness Causes of death in incident RRT patients Causes of death in prevalent RRT patients in 2008 Expected life years remaining on RRT Appendix 1: Survival tables Chapter 8
Chapter 9
Chapter 10
viii
122 126 127 129 130 130 132 132 132 134 134 134 135 138 139 140
Adequacy of Haemodialysis in UK Renal Centres in 2008: national and centre-specific analyses Andrew J Williams, Clare Castledine, Anna Casula and Graham Warwick
145
Introduction Methods Results Data completeness Achieved URR Changes in URR over time Variation of achieved URR with time on dialysis Discussion
145 146 147 147 148 149 149 149
Anaemia Variables in UK Adult Dialysis Patients in 2008: national and centre-specific analyses Donald Richardson, Daniel Ford, Julie Gilg, Andrew Williams
153
Introduction Methods Results Haemoglobin Factors affecting haemoglobin Ferritin Erythropoiesis stimulating agents Discussion
153 154 155 155 168 168 180 185
Biochemistry Profile of Patients Receiving Dialysis in the UK in 2008: national and centre-specific analyses Anne Dawnay, Ken Farrington, Clare Castledine, Dirk van Schalkwyk and Graham Warwick
187
Introduction Methods Results
188 188 189
Mineral and bone parameters Adjusted calcium Calcium phosphate product Parathyroid hormone Discussion – Mineral and bone parameters Bicarbonate Total cholesterol HbA1c Chapter 11
Chapter 12
Blood Pressure Profile of Prevalent Patients Receiving Dialysis in the UK in 2008: national and centre-specific analyses Janice Harper, Johann Nicholas, Lynsey Webb, Anna Casula and Andrew J Williams
239
Introduction Methods Results Data completeness Summary of BP achievements Haemodialysis Peritoneal dialysis Transplant Blood pressure by primary renal diagnosis Longitudinal analysis of incident HD patients Longitudinal BP analysis of incident PD patients Longitudinal BP analysis of prevalent RRT patients PRD considerations in prevalent HD patients PRD considerations in prevalent PD patients PRD considerations in prevalent transplant patients Discussion
239 240 241 241 242 242 248 250 251 253 256 257 257 258 258 258
Epidemiology of Methicillin Resistant Staphylococcus Aureus Bacteraemia Amongst Patients Receiving Dialysis for Established Renal Failure in England in 2008: a joint report from the UK Renal Registry and the Health Protection Agency Richard Fluck, Jennie Wilson, Charles RV Tomson Introduction Methods Results Organisational results Access and Modality Individual Episodes Centre Level Data Comparison with 2007 Report [3] Discussion Conclusion
Chapter 13
189 200 207 211 222 223 230 234
The UK Renal Registry Advanced CKD Study: frequency of incorrect reporting of date of start of RRT Daniel J Ford, Damian G Fogarty, Retha Steenkamp, Charles RV Tomson, Yoav Ben-Shlomo and David Ansell
261 262 262 262 262 263 263 263 265 266 269
271
ix
Chapter 14
Chapter 15
x
Introduction Methods UKRR pre-RRT study methods Results Haemodialysis patients with incorrect dates Patients with a correct date of start of RRT despite anomalous results Discussion
271 272 272 273 273 275 276
Demography of the UK Paediatric Renal Replacement Therapy population in 2008 Malcolm A Lewis, Joanne Shaw, Manish D Sinha, Shazia Adalat, Farida Hussain and Carol Inward
279
Introduction Methods Results The UK paediatric prevalent ERF population Incidence and prevalence Causes of ERF Mortality Current modality of RRT Discussion ERF paediatric population, incidence and prevalence Causes of ERF Mortality Current RRT modality
279 280 280 280 281 283 285 286 287 287 287 287 288
Clinical, Haematological and Biochemical Parameters in Patients receiving Renal Replacement Therapy in Paediatric Centres in the UK in 2008: national and centre-specific analyses Farida Hussain, Clare Castledine, Dirk van Schalkwyk, Manish D Sinha, Malcolm Lewis, Carol Inward
289
Introduction Methods Statistical analysis Standards Anthropometry Blood Pressure Anaemia Phosphate and calcium Results Data completeness Height, weight and BMI Blood pressure Haemoglobin Calcium and phosphate Discussion Anthropometry Blood pressure Anaemia Biochemistry Acknowledgements
290 290 291 292 292 292 292 292 292 292 294 297 301 304 305 306 306 306 307 307
Chapter 16
International Comparisons with the UK RRT Programme Kieron Donovan, Daniel Ford, Dirk van Schalkwyk, David Ansell
309
Introduction Methods Limitations of methods Results Incidence of RRT Prevalence of RRT Relationship between incidence and prevalence Estimated crude annual mortality on RRT Treatment modality Age Discussion
309 309 310 310 310 311 313 313 314 317 317
Appendix A The UK Renal Registry Statement of Purpose This appendix is available on the web only and can be found at www.renalreg.org
321
Appendix B Definitions and Analysis Criteria This appendix is available on the web only and can be found at www.renalreg.org
321
Appendix C Renal Services Described for Non-physicians This appendix is available on the web only and can be found at www.renalreg.org Appendix D Methodology used for Analyses of PCT/Local Authority Incidence and Prevalence and of Standardised Ratios This appendix is available on the web only and can be found at www.renalreg.org
321
Appendix E Additional Data Tables for 2008 New and Existing Patients This appendix is available on the web only and can be found at www.renalreg.org
321
Appendix F UK Renal Registry Dataset Specification This appendix is available on the web only and can be found at www.renalreg.org
321
Appendix G Coding: Ethnicity, EDTA Primary Renal Diagnoses, EDTA Causes of Death and Treatment Timeline Modality Codes This appendix is available on the web only and can be found at www.renalreg.org
321
Appendix H Acronyms and Abbreviations used in the Report
323
Appendix I
Laboratory Conversion Factors
327
Appendix J
Renal Centre Names and Abbreviations used in the Figures and Data Tables
329
xi
Chapter 1 Summary of findings in the 2009 UK Renal Registry Report Charles RV Tomsona a
UK Renal Registry, Bristol, UK
In 2008, all renal centres supplied electronic data extracts to the UK Renal Registry. In all analyses, marked variations between centres are reported. In 2008, the acceptance rate in the UK was 108 per million population (pmp). Acceptance rates in Scotland (103 pmp), Northern Ireland (97 pmp) and Wales (117 pmp) have all fallen compared to previous years, although Wales still remained the country with the highest acceptance rate. Diabetic renal disease remained the single most common cause of renal failure (24%). The incidence of late presentation (
