UK Renal Registry. 18th Annual Report

Transcription

1 The Renal Association UK Renal Registry Learning and Research Building Southmead Hospital, Southmead Road Bristol BS10 5NB UK Telephone + 44 (0) renalregistry@renalregistry.nhs.uk Web site 18th Annual Report Suggested citation NEPHRON 2016;132 (suppl1) UK Renal Registry 18th Annual Report of the Renal Association Caskey F, Castledine C, Dawnay A, Farrington K, Fogarty D, Fraser S, Kumwenda M, MacPhee I, Sinha MD, Steenkamp R, Williams AJ UK Renal Registry, Bristol, UK Publications based on UK Renal Registry data must include the citation as noted above and the following notice: The data reported here have been supplied by the UK Renal Registry of the Renal Association. The interpretation and reporting of these data are the responsibility of the authors and in no way should be seen as an official policy or interpretation of the UK Renal Registry or the Renal Association.

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3 The UK Renal Registry Management Team Ron Cullen (Chief Executive Officer) Fergus Caskey (Medical Director) Hilary Doxford (Head of Business Support) Karen Thomas (Head of Programmes) Biostatisticians Dr Anna Casula Rebecca Evans Dr Julie Gilg Dr Retha Steenkamp Business Support Sharece Charles Steph Shearn Laura Woodward Programmes Melanie Dillon Sarah Evans Rachel Gair James McCann Julie Slevin Teresa Wallace Operations Fran Benoy-Deeney Rupert Bedford Fiona Braddon Sarika Dahiya Rapolas Kaselis Shaun Mannings Jacqueline Stokes George Swinnerton Tim Whitlock Jo Wilson Registrars Dr Alexander Hamilton Dr Rishi Pruthi Dr Anirudh Rao Dr Catriona Shaw

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5 Foreword Established in 1995 by the Renal Association, the UK Renal Registry (UKRR) currently collects data from 71 adult and 13 paediatric kidney centres. The annual report, funded by a small capitation fee, provides a snapshot of centre performance across the UK and is used as a source document for audit and benchmarking against quality of care standards. The collection, validation, analysis and publication of these data requires a great deal of work by the UKRR team and we are indebted to all the staff for their contributions to this 18th Annual Report. This report primarily covers activities in 2014, with centre comparisons including survival data de-anonymised. When I last wrote the introduction for the UKRR report four years ago, I commented on the growing range of activities that the UKRR was supporting, including the National Registry for Rare Diseases (RaDaR), PatientView (PV), the Acute Kidney Injury Programme ( Think Kidneys ) and The UK Renal Data Collaboration (UK RDC). These projects have continued to develop under the watchful eye of Ron Cullen, Chief Executive with support and strategic input from Fergus Caskey, Medical Director, Hilary Doxford, Head of Business and Development and Karen Thomas, Head of Programmes. This growth beyond the core business continues apace with the UKRR now contributing to research studies such as the Surveying People Experiencing young Adult Kidney failure (SPEAK) project. There are also plans for the UKRR to provide follow-up data on patients recruited into cohort studies and clinical trials in the near future. Having made an important contribution to data collection over the last 20 years, it seems logical that the UKRR should become involved in the Kidney Quality Improvement Partnership (KQuIP). This multi-professional initiative, agreed by the whole renal community in the Kidney Health: Delivering Excellencedocument, aims to improve the quality of care delivered, reduce variation and improve patient outcomes by spreading best practice. As a key partner, the UKRR will act as the data and analysis resource, providing logistic support and a learning platform. Although the UKRR has secured grant funding for some of these additional activities, long-term sustainability will require an increase in regular income from capitation fees. For the past five years the capitation fee has been per patient, levied as separate fees for the UKRR and PatientView on dialysis and transplant patients and representing less than 0.08% of the average annual cost of treating these patients. An increase to 30 per patient has recently been proposed and agreed by NHS England, thus securing the UKRR s contribution to these important projects into the future. David Wheeler Chair, UK Renal Registry Renal Information Governance Board

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7 Chapters and appendices UK Renal Registry 18th Annual Report: Introduction Chapter 1 UK Renal Replacement Therapy Incidence in 2014: National and Centre-specific Analyses Chapter 2 UK Renal Replacement Therapy Prevalence in 2014: National and Centre-specific Analyses Chapter 3 Demographic and Biochemistry Profile of Kidney Transplant Recipients in the UK in 2014: National and Centre-specific Analyses Chapter 4 Demography of the UK Paediatric Renal Replacement Therapy Population in 2014 Chapter 5 Survival and Cause of Death in UK Adult Patients on Renal Replacement Therapy in 2014: National and Centre-specific Analyses Chapter 6 Comorbidities and Current Smoking Status amongst Patients starting Renal Replacement Therapy in England, Wales and Northern Ireland from 2013 to 2014 Chapter 7 Adequacy of Haemodialysis in UK Adult Patients in 2014: National and Centre-specific Analyses Chapter 8 Haemoglobin, Ferritin and Erythropoietin amongst UK Adult Dialysis Patients in 2014: National and Centre-specific Analyses Chapter 9 Biochemical Variables amongst UK Adult Dialysis Patients in 2014: National and Centre-specific Analyses Chapter 10 Clinical, Haematological and Biochemical Parameters in Patients Receiving Renal Replacement Therapy in Paediatric Centres in the UK in 2014: National and Centre-specific Analyses Chapter Multisite Dialysis Access Audit in England, Northern Ireland and Wales and 2013 PD One Year Follow-up:National and Centre-specific Analyses Chapter 12 Epidemiology of Reported Infections amongst Patients Receiving Dialysis for Established Renal Failure in England in 2013 to 2014: a Joint Report from Public Health England and the UK Renal Registry Appendix A The UK Renal Registry Statement of Purpose Appendix B Definitions and Analysis Criteria Appendix C Renal Services Described for Non-physicians Appendix D Methodology used for Analyses of CCG/HB Incidence and Prevalence Rates and of Standardised Ratios Appendix E Methodology for Estimating Catchment Populations of Renal Centres in the UK for Dialysis Patients Appendix F Additional Data Tables for 2014 new and existing patients Appendix G UK Renal Registry dataset specification Appendix H Coding: Ethnicity, EDTA Primary Renal Diagnoses, EDTA Causes of Death Appendix I Acronyms and Abbreviations used in the Report Appendix J Laboratory Conversion Factors Appendix K Renal Centre Names and Abbreviations used in the Figures and Data Tables

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9 Contents UK Renal Registry 18th Annual Report: Introduction 1 Fergus Caskey, Ron Cullen Activity since the last Annual Report 1 The UK Renal Data Collaboration 1 Changes in eligibility for reporting to the UKRR and the dataset: dialysis and plasma exchange for AKI and CKD stages 4 and 5 2 National Programmes working with NHS England 2 Research 2 Output since the last Annual Report 3 Completeness of data returns from UK renal centres 3 Interpretation of centre-specific clinical measures and survival comparisons 3 Information governance 6 Conclusion 7 Chapter 1 UK Renal Replacement Therapy Incidence in 2014: National and Centre-specific Analyses 9 Julie Gilg, Fergus Caskey, Damian Fogarty Introduction 10 Definitions 10 UK Renal Registry coverage 10 Renal Association Guidelines Geographical variation in incidence rates Demographics and clinical characteristics of patients starting RRT Late presentation and delayed referral of incident patients 32 International comparisons 37 Survival of incident patients 37 Conclusions 37 Acknowledgement 38 Chapter 2 UK Renal Replacement Therapy Prevalence in 2014: National and Centre-specific Analyses 41 Stephanie J MacNeill, Anna Casula, Catriona Shaw, Clare Castledine Introduction 42 Methods 42 Results 42 Prevalent patient numbers and changes in prevalence 42 Prevalent patients by RRT modality and centre 43 Changes in prevalence 43 Prevalence of RRT in Clinical Commissioning Groups in England (CCGs), Health and Social Care Areas in Northern Ireland (HBs), Local Health Boards in Wales (HBs) and Health Boards in Scotland (HBs) 43 Factors associated with variation in standardised prevalence ratios in Clinical Commissioning Groups in England, Health and Social Care Trust Areas in Northern Ireland, Local Health Boards in Wales and Health Boards in Scotland 45

10 Case mix in prevalent RRT patients 47 International comparisons 65 Conclusions 66 Acknowledgement 67 Chapter 3 Demographic and Biochemistry Profile of Kidney Transplant Recipients in the UK in 2014: National and Centre-specific Analyses 69 Rishi Pruthi, Anna Casula, Iain MacPhee Introduction 70 Transplant activity, waiting list activity and survival data 70 Introduction 70 Methods 70 Results 70 Conclusions 72 Transplant demographics 72 Introduction 72 Methods 72 Results and Conclusions 72 Clinical and laboratory outcomes 81 Introduction 81 Methods 81 Results and conclusions 84 Analysis of prevalent patients by CKD stage 92 Introduction 92 Methods 92 Results and conclusions 92 egfr slope analysis 93 Introduction 93 Methods 93 Results and conclusions 93 Cause of death in transplant recipients 93 Introduction 93 Methods 93 Results and conclusions 93 Appendix 1: Reporting status of audit measures 97 Chapter 4 Demography of Patients Receiving Renal Replacement Therapy in Paediatric Centres in the UK in Alexander J Hamilton, Fiona Braddon, Anna Casula, Carol Inward, Malcolm Lewis, Tamara Mallett, Heather Maxwell, Catherine O Brien, Yincent Tse, Manish D Sinha Introduction 100 Methods 100 Results 100 Data returns 100 The UK paediatric prevalent ERF population in Modality of treatment 102 Cause of ERF 103

11 The UK incident paediatric ERF population in Trends in ERF demographics 104 Pre-emptive transplantation 106 Transfer of patients to adult renal services in Survival of children on RRT during childhood 107 Mortality data in Discussion 109 Data returns 109 Highlights from the 2014 data 109 Current and future work 109 Acknowledgement 110 Chapter 5 Survival and Causes of Death in UK Adult Patients on Renal Replacement Therapy in 2014: National and Centre-specific Analyses 111 Retha Steenkamp, Anirudh Rao, Simon Fraser Introduction 112 Methods 112 Results Incident (new RRT) patient survival 114 Overall survival 114 Survival by UK country 114 Survival by modality 115 Survival by age 115 Age and the hazard of death 117 Survival by gender 117 Survival in the cohort 117 Long term survival: trends up to 10 years post RRT start 118 Change in survival on RRT by vintage 118 Centre variability in one year after 90 days survival 120 Centre variability in one year after 90 day survival: impact of adjustment for comorbidity 121 Survival in patients with diabetes 122 Survival in prevalent dialysis patients 124 Overall survival 124 Survival by UK country 124 One year survival of prevalent dialysis patients by centre 125 Survival by age group 125 One year death rate in prevalent dialysis patients in the 2013 cohort by age group 125 Time trends in survival, 2004 to Survival in patients with diabetes 125 Time trends in patients with a primary diagnosis of diabetes 126 Death rate on RRT compared with the UK general population 126 Causes of death 128 Data completeness 128 Causes of death in incident RRT patients 129 Causes of death within the first 90 days 129 Causes of death within one year after 90 days 129 Cause of death in prevalent RRT patients in the 2013 cohort 130 Conclusion 131 Appendix 1: Survival tables 134

12 Chapter 6 Chapter 7 Comorbidities and Current Smoking Status amongst Patients starting Renal Replacement Therapy in England, Wales and Northern Ireland from 2013 to Retha Steenkamp, Fergus Caskey Introduction 146 Methods 146 Results 147 Completeness of comorbidity returns from each participating centre 147 Prevalence of multiple comorbidity 149 Frequency of each comorbid condition 149 Prevalence of comorbidity by age group 149 Prevalence of comorbidity by ethnic origin 150 Prevalence of comorbidity amongst patients with diabetes mellitus 151 Late presentation and comorbidity 151 Age and comorbidity in patients by treatment modality at start of RRT 151 Discussion 153 Data completeness in the UKRR and the pattern of missing comorbidity data 153 Improving comorbidity data completeness 153 Expansion of comorbidity data collected 153 Adequacy of Haemodialysis in UK Adult Patients in 2014: National and Centre-specific Analyses 155 Andrew Davenport, Catriona Shaw, Retha Steenkamp Introduction 156 Methods 156 Results 157 Data completeness 157 Achieved URR 158 Changes in URR over time 160 Variation of achieved URR with time on dialysis 160 Conclusions 165 Chapter 8 Haemoglobin, Ferritin and Erythropoietin amongst UK Adult Dialysis Patients in 2014: National and Centre-specific Analyses 169 Julie Gilg, Anirudh Rao, Andrew J Williams Introduction 170 Methods 170 Results 171 Anaemia management in incident dialysis patients 171 Anaemia management in prevalent dialysis patients 175 Conclusions 193 Chapter 9 Biochemical Variables amongst UK Adult Dialysis Patients in 2014: National and Centre-specific Analyses 195 Johann Nicholas, Rebecca Evans, Catriona Shaw, Anne Dawnay Introduction 196 Methods 196 Results 198 Mineral and bone variables 198

13 Adjusted calcium 200 Parathyroid hormone 206 Bicarbonate 222 Conclusions 234 Chapter 10 Chapter 11 Chapter 12 Clinical, Haematological and Biochemical Parameters in Patients Receiving Renal Replacement Therapy in Paediatric Centres in the UK in 2014: National and Centre-specific Analyses 237 Alexander J Hamilton, Fiona Braddon, Anna Casula, Carol Inward, Malcolm Lewis, Tamara Mallett, Heather Maxwell, Catherine O Brien, Yincent Tse, Manish D Sinha Introduction 238 Methods 238 Results 239 Data completeness 239 Growth 239 Cardiovascular risk factor evaluation 244 Laboratory and clinical indices quarterly data 246 Laboratory and clinical indices annual data 247 Discussion 249 Quarterly data 249 Highlights from the 2014 data 249 Future work 250 Acknowledgement Multisite Dialysis Access Audit in England, Northern Ireland and Wales and 2013 PD One Year Follow-up: National and Centre-specific Analyses 253 Anirudh Rao, Rebecca Evans, Martin Wilkie, Richard Fluck, Mick Kumwenda Introduction 254 Methods 254 Results 254 Inclusion and exclusion criteria 254 Data completeness 255 Variations in first dialysis access 255 First dialysis access by renal centre 260 First dialysis access and referral time 260 First dialysis access and surgical assessment 262 Dialysis access at three months after starting RRT PD access audit one-year follow-up 271 Conclusions 275 Acknowledgement 277 Epidemiology of Reported Infections amongst Patients Receiving Dialysis for Established Renal Failure in England 2013 to 2014: a Joint Report from Public Health England and the UK Renal Registry 279 Rebecca Evans, Fergus Caskey, Richard Fluck, Lisa Crowley, John Davies, Olisaeloka Nsonwu, Ken Farrington Introduction 280 Methods 280

14 Results 281 Validation 281 Methicillin resistant Staphylococcus aureus 281 Methicillin sensitive Staphylococcus aureus 282 Clostridium difficile 284 Escherichia coli 285 Conclusions 285 Acknowledgements 286 Appendix 1: Processes for reporting of infections to Public Health England 287 Appendix A The UK Renal Registry Statement of Purpose 289 Appendix B Definitions and Analysis Criteria 295 Appendix C Renal Services Described for Non-physicians 301 Appendix D Appendix E Methodology for Analyses of CCG/HB Incidence and Prevalence Rates and of Standardised Ratios 305 Methodology for Estimating Catchment Populations of Renal Centres in the UK for Dialysis Patients 309 Appendix F Additional Data Tables for 2014 Incident and Prevalent Patients 313 Appendix G UK Renal Registry Dataset Specification 353 Appendix H Coding: Ethnicity, EDTA Primary Renal Diagnoses, EDTA Causes of Death 355 Appendix I Acronyms and Abbreviations used in the Report 359 Appendix J Laboratory Conversion Factors 363 Appendix K Renal Centre Names and Abbreviations used in the Figures and Data Tables 365