ISSN 1471-3349 The Renal Association UK Renal Registry The Ninth Annual Report December 2006 This report was prepared by Dr David Ansell, Professor Terry Feest, Dr Alex Hodsman, Dr Raman Rao Dr Charlie Tomson, Dr Uday Udayaraj, Dr Andrew Williams and Dr Graham Warwick in association with F Caskey, K Farrington, R Fluck, J Harper, E Lamb, M Lewis, J Macdonald, R Ravanan, D Richardson, D Thomas Editors Dr D Ansell Prof T Feest Dr C Tomson Dr AJ Williams Dr G Warwick Biostatisticians Prof D van Schalkwyk Mrs M Steenkamp Dr J Gilg Registry Registrars Dr A Hodsman Dr R Rao Dr U Udayaraj Proof reading by Mrs F Benoy-Deeney Ms H Doxford Suggested citation Ansell D, Feest TG, Tomson C, Williams AJ, Warwick G UK Renal Registry Report 2006 UK Renal Registry, Bristol, UK This report will also become available as a supplement to Nephrology Dialysis & Transplantation. The individual chapters should then be referenced by their Medline citation. Publications based on the 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. The Renal Association UK Renal Registry Southmead Hospital Southmead Rd Bristol BS10 5NB UK Telephone 0117 959 5665 Fax 0117 959 5664 Email [email protected] Web site www.renalreg.org General Manager Hilary Doxford Systems Manager David Bull Clinical Data Managers Fran Benoy-Deeney Paul Dawson Programmers Matthew Brealey Andy Langdon Secretary / PA Becky Blackwell UK Renal Registry Director: Dr D Ansell Accounts: MCI Ltd The UK Renal Registry Subcommittee Chairman: Dr C Tomson Secretary: Dr E Will Members: Dr F Caskey Prof S Davies Dr R Fluck Dr J Harper Dr P Roderick Dr P Stevens Dr D Thomas Mrs N Thomas Dr A Williams Ex Officio Renal Association: Prof J Feehally (President), Dr D Goldsmith (Secretary) Prof A Rees (Management Board Chair) Dr G Bell (Executive) Dr C Winearls (Clinical Vice President) Northern Ireland: Dr D Fogarty Scotland: Dr K Simpson Wales: Dr K Donovan British Association of Paediatric Nephrology: Dr C Reid British Transplantation Society: Mr A Bakran, Dr C Dudley Association for Clinical Biochemistry: Dr E Lamb Department of Health: Mr G Lynch Royal College of Nursing: Ms A Redmond Health Commissioners: Mrs Jenny Scott National Kidney Federation (patient rep): Mr K Tupling Retired Dr R Burden, Dr D O’Donoghue, Prof T Feest, Ms T Lee, Members 2006: Dr J Woods iii Contents Chapter 1: Summary of Findings in the 2006 UK Renal Registry Report 1 Chapter 2: Introduction to the 2006 UK Renal Registry Report 3 David Ansell, Es Will and Charlie Tomson 3 Quality Improvement 3 Geographical areas covered by the UK Renal Registry 4 Future coverage by the Registry 5 Centres submitting 2006 and 2007 data 6 Completeness of returns for four important data items 6 Software and links to the Registry 8 Paediatric Renal Registry links 8 Links with other organisations 8 Commissioning of renal services and PCTs 9 The Registry and clinical governance 9 Anonymity and confidentiality 10 The ‘Health and Social Care Act 2001’: section 60 exemption 10 Support for renal services in Connecting for Health – the National Programme for IT 10 Support for renal systems managers and informatics staffs 10 Interpretation of the data within the report 11 Future potential 11 Support for Renal Specialist Registrars undertaking a non-clinical secondment 11 New data collection and analysis 11 Recent UK Renal Registry peer reviewed publications 12 Commissioned research and reports 13 Distribution of the Registry Report 13 Chapter 3: New Adult Patients Starting Renal Replacement Therapy in the UK in 2005 15 Ken Farrington, Raman Rao, Julie Gilg, David Ansell and Terry Feest 15 Summary 15 Introduction 16 Adult patients accepted for renal replacement therapy in the UK, 2005 16 Overall take-on rate 16 Local changes in acceptance rate 17 Acceptance rates of individual units 17 Geographical variation in acceptance rates in England, Northern Ireland, Scotland and Wales 19 Introduction 19 Methods 19 Results 19 Ethnicity 25 Age 27 Gender 29 Primary renal diagnosis 31 First established treatment modality 33 Survival of incident patients 37 Late referral of incident patients 37 v Methodology 37 Late referral by centre and year 38 Time referred before dialysis initiation in the 2005 incident cohort 38 Age and late referral 38 Gender and late referral 39 Ethnicity, social deprivation and late referral 39 Primary renal disease and late referral in 2005 incident cohort 40 Modality and late referral 40 Co-morbidity and late referral 40 Haemoglobin and late referral 40 Renal function at the time of starting RRT 41 eGFR and late referral 41 eGFR and age 41 Changes over time in eGFR at start of RRT 41 Chapter 4: All Patients Receiving Renal Replacement Therapy in the United Kingdom in 2005 43 Ken Farrington, Raman Rao, Retha Steenkamp, David Ansell and Terry Feest 43 Summary 43 Introduction 44 All adult patients receiving Renal Replacement Therapy in the UK, 31/12/2005 44 Prevalent patients by renal unit on 31/12/2005 45 Changes in prevalence 2000–2005 47 Local Authority prevalence 50 Standardised prevalence ratios 50 Vintage of prevalent patients 57 Age of prevalent patients 57 Gender 59 Ethnicity 60 Primary renal disease 62 Diabetes 63 Modalities of treatment 64 Haemodialysis 65 Peritoneal dialysis 67 Change in treatment modality 1997–2005 70 Survival of patients established on RRT 70 One year survival of prevalent dialysis patients 73 One year survival of prevalent dialysis patients in England, Wales and Scotland from 1997–2005 73 References 76 Chapter 5: The UK Vascular Access Survey – Follow-up Data and Repeat Survey 77 Richard Fluck, Raman Rao, Dirk van Schalkwyk, David Ansell and Terry Feest 77 Summary 77 Introduction 77 Methods 77 Vascular Access Survey 2006 77 Vascular Access Survey 2005 Follow up data and organisational data 78 Results 78 Vascular Access Survey 2006 78 Morbidity data 78 Vascular Access Survey 2005 – follow-up data 80 Data returns 80 vi Access modality at start, 6 & 12 months post commencement of renal replacement therapy 80 Transplantation and transplant waiting list 82 Patient pathway 82 Mortality and incident access and modality 84 Organisational data 84 Discussion 84 Summary and recommendations 85 Acknowledgments 85 References 86 Chapter 6: Co-morbidities in UK Patients at the Start of Renal Replacement Therapy 87 Charlie Tomson, Uday Udayaraj, Julie Gilg and David Ansell 87 Summary 87 Introduction 87 Methods 87 Results 88 Completeness of co-morbidity returns from each participating renal unit 88 Frequency of each co-morbidity condition 90 Frequency of multiple co-morbidity 90 Frequency of co-morbidity by age band 91 Frequency of co-morbidity amongst patients with diabetes 91 Age and co-morbidity in patients starting haemodialysis compared to those starting peritoneal dialysis 91 Frequency of co-morbidity by ethnic origin 92 Renal function at the time of starting RRT and co-morbidity 95 Haemoglobin concentration at the time of starting RRT and co-morbidity 96 Co-morbidity and subsequent kidney transplantation 96 Co-morbidity and subsequent survival – Introduction 97 Co-morbidity and survival within 90 days of commencing RRT 97 Co-morbidity and survival 1 year after 90 days of commencing RRT 99 Discussion 100 References 100 Chapter 7: Haemodialysis Dose and Serum Bicarbonate 103 Charlie Tomson, David Thomas, Raman Rao, Dirk van Schalkwyk and David Ansell 103 Summary 103 Introduction 103 Completeness of data 103 Dialysis dose 103 Introduction 103 Achieved URR 105 Changes in URR over time 106 Variation of achieved URR with time on dialysis 106 Commentary 106 Serum bicarbonate 110 Introduction 110 Haemodialysis 110 Peritoneal dialysis 112 Transplant 113 Commentary 113 References 114 vii Chapter 8: Management of Anaemia in Haemodialysis and Peritoneal Dialysis Patients 115 Donald Richardson, Alex Hodsman, Dirk van Schalkwyk, Charlie Tomson and Graham Warwick 115 Summary 115 Introduction 115 Methods 115 Haemoglobin 116 Haemoglobin of patients with CKD 116 Haemoglobin of prevalent haemodialysis patients 120 Haemoglobin of prevalent peritoneal dialysis patients 124 Haemoglobin in incident patients 125 Changes in Haemoglobin by length of time on dialysis over time 133 Factors affecting Haemoglobin 134 Completeness of serum ferritin returns for HD and PD 134 Serum ferritin 134 Erythropoiesis Stimulating Agents 141 Conclusion 147 References 147 Chapter 9: Serum Calcium, Phosphate, Parathyroid Hormone, Albumin, Aluminium and Cholesterol Achievement on Replacement Therapy 149 Ed Lamb, Alex Hodsman, Dirk van Schalkwyk, David Ansell and Graham Warwick 149 Summary 149 Introduction 149 Methods 150 Serum phosphate 150 Data completeness 150 Achievement of serum phosphate 150 Identification of outliers in achievement of serum phosphate 152 Serum calcium 154 Data completeness 154 Achievement of serum calcium 154 Serum calcium  phosphate product 156 Serum parathyroid hormone 158 Data completeness 158 Achievement of serum iPTH 158 Albumin 160 Aluminium 161 Cholesterol 161 Data completeness 161 Achievement of serum cholesterol 161 References 164 Appendix for definition of prevalent cohort for biochemistry chapter 165 Definition of prevalent cohort 165 Chapter 10: Factors Which May Influence Cardiovascular Disease in Dialysis