The Renal Association UK Renal Registry

Transcription

1 The Renal Association UK Renal Registry Southmead Hospital Southmead Road Bristol BS10 5NB UK Telephone þ 44 (0) Fax þ 44 (0) Web site 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

2 UK Renal Registry Director: Accounts: Dr D Ansell MCI Ltd The UK Renal Registry Committee Chairman: Secretary: Members: Dr C Tomson Dr A J Williams 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

3 Contents Chapter 1 Summary of findings in the 2009 UK Renal Registry Report c1 Charles RV Tomson Chapter 2 c3 Charles RV Tomson and Christopher Maggs National developments c3 Clinical information systems used in UK renal centres c4 Completeness of returns from UK renal centres c4 Interpretation of centre-specific comparisons c4 The role of the UKRR in improvement and the identification of underperformance c6 Information governance c6 Paediatric Registry c7 Peer-reviewed publications since the last Annual Report c7 Chapter 3 UK ESRD Incident Rates in 2008: national and centre-specific analyses c9 Catherine Byrne, Daniel Ford, Julie Gilg, David Ansell and John Feehally c9 UK Renal Registry coverage c10 1 Geographical variation in acceptance rates c10 c10 c10 2 Demographics and clinical characteristics of patients accepted onto RRT c17 c17 c19 Age c19 Gender c22 Ethnicity c22 Primary renal diagnosis c22 First established treatment modality c28 Renal function at the time of starting RRT c31 3 Late presentation (referral) of incident patients c34 c34 c34 c34 Late presentation by centre and year c34 Time referred before dialysis initiation in the 2008 incident cohort c37 Age and late presentation c37 Gender and late presentation c37 Ethnicity, social deprivation and late presentation c37 Primary renal disease and late presentation c37 Modality and late presentation Comorbidity and late presentation Haemoglobin and late presentation egfr at start of RRT and late presentation

4 Survival of incident patients Summary Chapter 4 UK ESRD Prevalent Rates in 2008: national and centre-specific analyses c41 Catherine Byrne, Retha Steenkamp, Clare Castledine, David Ansell and John Feehally c41 c42 c42 Prevalent patient numbers and changes in prevalence c42 Prevalent patients by RRT centre c43 Changes in prevalence c43 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) c47 Factors associated with variation in standardised prevalence ratios in PCTs in England, Local Authorities in Wales, Scotland and Northern Ireland (PCT/LA) c48 Case mix in prevalent RRT patients c48 Summary c67 Chapter 5 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 Transplant activity, waiting list activity and survival data Method Conclusions Transplant demographics and discussion Age and gender Primary renal diagnosis Ethnicity Comorbidity Clinical and laboratory outcomes 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 c69 c69 c70 c70 c70 c70 c70 c71 c71 c71 c71 c71 c72 c77 c77 c81 c81 c83 c84 c84 c86 c89 c90 c90 c92 c94 c95 c96 c96

5 Chapter 6 Chapter 7 Serum parathyroid hormone concentration Analysis of prevalent patients by CKD stage and Causes of death in transplant recipients and discussion Causes of death in prevalent RRT patients in 2008 by modality and age 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 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 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 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 of incident (new RRT) patient survival Comparison with audit standards Comparison of survival between UK countries Modality c99 c99 c99 c99 c99 c100 c100 c100 c100 c100 c103 c104 c104 c106 c106 c106 c106 c108 c108 c109 c111 c111 c111 c111 c111 c112 c113 c114 c117 c118 c118 c118 c119 c119 c120 c120 c120 c120 c120 c121 c122

6 Age c122 Change in survival on renal replacement therapy by vintage c126 Analysis of centre variability in 1 year after 90 days survival c127 Analysis of the impact of adjustment for comorbidity on the 1 year after 90 day survival c129 of prevalent patient survival analyses c130 One year survival of prevalent dialysis patients by centre c130 The 2008, one year death rate in prevalent dialysis patients by age band c132 One year survival of prevalent dialysis patients by UK country from c132 One year survival of prevalent dialysis patients with a primary diagnosis of diabetes from c132 Death rate on RRT compared with the UK general population c134 of analyses on causes of death c134 Data completeness c134 Causes of death in incident RRT patients c135 Causes of death in prevalent RRT patients in 2008 c138 Expected life years remaining on RRT c139 Appendix 1: Survival tables c140 Chapter 8 Chapter 9 Chapter 10 Adequacy of Haemodialysis in UK Renal Centres in 2008: national and centre-specific analyses Andrew J Williams, Clare Castledine, Anna Casula and Graham Warwick Data completeness Achieved URR Changes in URR over time Variation of achieved URR with time on dialysis Anaemia Variables in UK Adult Dialysis Patients in 2008: national and centre-specific analyses Donald Richardson, Daniel Ford, Julie Gilg, Andrew Williams Haemoglobin Factors affecting haemoglobin Ferritin Erythropoiesis stimulating agents 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 c145 c145 c146 c147 c147 c148 c149 c149 c149 c153 c153 c154 c155 c155 c168 c168 c180 c185 c187 c188 c188 c189

7 Mineral and bone parameters Adjusted calcium Calcium phosphate product Parathyroid hormone Mineral and bone parameters Bicarbonate Total cholesterol HbA1c Chapter 11 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 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 c189 c200 c207 c211 c222 c223 c230 c234 c239 c239 c240 c241 c241 c242 c242 c248 c250 c251 c253 c256 c257 c257 c258 c258 c258 Chapter 12 Chapter 13 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 Organisational results Access and Modality Individual Episodes Centre Level Data Comparison with 2007 Report [3] Conclusion 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 c261 c262 c262 c262 c262 c263 c263 c263 c265 c266 c269 c271

8 UKRR pre-rrt study methods Haemodialysis patients with incorrect dates Patients with a correct date of start of RRT despite anomalous results c271 c272 c272 c273 c273 c275 c276 Chapter 14 Demography of the UK Paediatric Renal Replacement Therapy population in 2008 c279 Malcolm A Lewis, Joanne Shaw, Manish D Sinha, Shazia Adalat, Farida Hussain and Carol Inward c279 c280 c280 The UK paediatric prevalent ERF population c280 Incidence and prevalence c281 Causes of ERF c283 Mortality c285 Current modality of RRT c286 c287 ERF paediatric population, incidence and prevalence c287 Causes of ERF c287 Mortality c287 Current RRT modality c288 Chapter 15 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 Statistical analysis Standards Anthropometry Blood Pressure Anaemia Phosphate and calcium Data completeness Height, weight and BMI Blood pressure Haemoglobin Calcium and phosphate Anthropometry Blood pressure Anaemia Biochemistry Acknowledgements c289 c290 c290 c291 c294 c297 c301 c304 c305 c306 c306 c306 c307 c307

9 Chapter 16 International Comparisons with the UK RRT Programme c309 Kieron Donovan, Daniel Ford, Dirk van Schalkwyk, David Ansell c309 c309 Limitations of methods c310 c310 Incidence of RRT c310 Prevalence of RRT c311 Relationship between incidence and prevalence c313 Estimated crude annual mortality on RRT c313 Treatment modality c314 Age c317 c317 Appendix A The UK Renal Registry Statement of Purpose c321 A:1 Executive summary c321 A:2 c321 A:3 Statement of intent c322 A:4 Relationships of the UK Renal Registry c323 A:5 The role of the UK Renal Registry for patients c323 A:6 The role of the UK Renal Registry for nephrologists c323 A:7 The role of the UK Renal Registry for Trust managers c324 A:8 The role of the UK Renal Registry for Commissioners of health care c325 A:9 The role of the UK Renal Registry for national quality assurance agencies c325 Appendix B Definitions and Analysis Criteria c327 B:1 Definition of the incident (take-on) population c327 B:2 Definition of the prevalent population for each year c327 Further exclusions when analysing quarterly biochemistry or BP data B:3 Statistical definitions Death rate calculation Odds ratio Hazard function Hazard ratio B:4 General and modality definitions Definitions of analysis quarters Home haemodialysis Satellite dialysis unit Start of established renal failure Change of modality from PD to HD B:5 Comorbidity definitions Angina Previous MI within last 3 months Previous MI 3 months ago Previous CABG or coronary angioplasty Previous episode of heart failure Cerebrovascular disease Diabetes (not causing ESRF) Chronic obstructive pulmonary disease

10 Liver Disease Malignancy Claudication Ischaemic/neuropathic ulcers Angioplasty, stenting, vascular graft (all non coronary) Amputation for peripheral vascular disease Smoking Appendix C Renal Services Described for Non-physicians c331 The role of the kidneys c331 Kidney diseases c331 Chronic kidney disease (CKD) and established renal failure (ERF) c331 Causes of CKD c332 Prevention and management c332 Acute kidney injury c332 Complications and comorbidity c332 Renal replacement therapy c333 Renal dialysis c333 Haemodialysis c333 Peritoneal dialysis c333 Renal transplantation c333 Nature of renal services c334 References c334 Appendix D Methodology used for Analyses of PCT/Local Authority Incidence and Prevalence Rates and of Standardised Ratios Patients Years used Geography Areas included in the UK Registry covered population Population data Calculation of rates and rate ratios Crude rates Standardised acceptance/prevalence ratios (SAR/SPR or SR) Remaining variability between rates Caution needed when comparing a PCT/LA s standardised incidence or prevalence ratios over time c335 c335 c335 c335 c335 c336 c336 c336 c336 c337 c337 Appendix E Additional Data Tables for 2008 new and existing patients c338 E:1 Patients starting renal replacement therapy in 2008 c338 E:2 Prevalent patients on 31/12/2008 c341 Appendix F UK Renal Registry Dataset Specification c357 Appendix G Coding: Ethnicity, EDTA Primary Renal Diagnoses, EDTA Causes of Death and Treatment Timeline Modality Codes c358 G1: Ethnicity coding c358 G2: EDTA primary renal diagnoses c359 G3: EDTA cause of death c361 G4: Treatment timeline modality codes RR7 (version 3.14) c362

11 Appendix H Acronyms and Abbreviations used in the Report c364 Appendix I Laboratory Conversion Factors c367 Appendix J Renal Centre Names and Abbreviations used in the Figures and Data Tables c368