Clare Castledine

UK Renal Registry 17th Annual Report: Chapter 2 UK Renal Replacement Therapy Prevalence in 2013: National and Centre-specific Analyses

INTRODUCTION This chapter describes the characteristics of adult patients on renal replacement therapy (RRT) in the UK in 2013. METHODS Data were electronically collected from all 71 renal centres within the UK. A series of cross sectional and longitudinal analyses were performed to describe the demographics of prevalent RRT patients in 2013 at centre and national level. RESULTS There were 56,940 adult patients receiving RRT in the UK on 31st December 2013. The UK adult prevalence of RRT was 888 pmp which represented an annual increase of 4%,with transplantation the most common treatment modality(52%). There was variation between centres, Clinical Commissioning Groups and Health Boards. The number of patients increased by 1.2% for haemodialysis (HD) and 7.1% for functioning transplant but decreased 3.3% for peritoneal dialysis (PD). The number of patients receiving home HD has increased by 3% since 2012. Median RRT vintage for patients on HD was 3.4 years, PD 1.7 years and for transplant, 10.1 years. The median age of prevalent patients was 58 years (HD 67 years, PD 64 years, transplant 53 years)compared to 55 years in 2000. For all ages the prevalence rate in men exceeded that in women. The most common recorded renal diagnosis was glomerulonephritis (biopsy proven/not biopsy proven) (19%). CONCLUSIONS The HD and transplant population continued to expand; but the prevalent PD population continues to decline. There were national, regional and centre level variations in prevalence rates. This has continued implications for service planning and ensuring equity of care for RRT patients.

Chapter 1: UK RRT Incidence in 2009: National and Centre-Specific Analyses

Introduction: This chapter describes the characteristics of adult patients starting renal replacement therapy (RRT) in the UK in 2010 and the incidence rates for RRT in Primary Care Trusts and Health Boards (PCT/HBs) in the UK. Methods: The basic demographics and clinical characteristics are reported on patients starting RRT from all UK renal centres. Presentation time, defined as time between first being seen by a nephrologist and start of RRT, was also studied. Age and gender standardised ratios for incidence rates in PCT/HBs were also calculated. Results: In 2010, the incidence rates in the UK and England were similar to 2009 at 107 per million population (pmp). The incidence rate fell in Scotland (from 104 pmp to 95 pmp), increased in Northern Ireland (from 88 pmp to 101 pmp) and Wales (from 120 pmp to 128 pmp). There were wide variations between PCT/HBs in standardised incidence ratios. The median age of all incident patients was 64.9 years (IQR 51.0, 75.2). For transplant centres this was 63.1 years (IQR 49.7, 74.2) and for non-transplanting centres 66.5 years (IQR 52.9, 76.0). The median age for non-Whites was 57.1 years. Diabetic renal disease remained the single most common cause of renal failure (24%). By 90 days, 68.3% of patients were on haemodialysis, 18.1% on peritoneal dialysis, 7.7% had had a transplant and 5.9% had died or stopped treatment. The mean eGFR at the start of RRT was 8.7 ml/ min/1.73 m2 which was similar to the previous three years. Late presentation (<90 days) fell from 28.2% in 2005 to 20.6% in 2010. There was no relationship between social deprivation and presentation pattern. Conclusions: Incidence rates have plateaued in England over the last five years. They have fallen in Scotland and fallen and then risen again in Northern Ireland and Wales. Wales continued to have the highest incidence rate of the countries making up the UK.

UK Renal Registry 13th Annual Report (December 2010): Chapter 2: UK RRT prevalence in 2009: national and centre-specific analyses.

Introduction: This chapter describes the characteristics of adult patients on renal replacement therapy (RRT) in the UK in 2009. The prevalence rates per million population (pmp) were calculated for Primary Care Trusts in England, Health and Social Care Areas in Northern Ireland, Local Health Boards in Wales and Health Boards in Scotland. These areas will be referred to in this report as ‘PCT/HBs’. Methods: Data were electronically collected from all 72 renal centres within the UK. A series of cross-sectional and longitudinal analyses were performed to describe the demographics of prevalent RRT patients in 2009 at centre and national level. Age and gender standardised ratios for prevalence rates in PCT/HBs were calculated. Results: There were 49,080 adult patients receiving RRT in the UK on 31st December 2009, equating to a UK prevalence of 794 pmp. This represented an annual increase in prevalent numbers of approximately 3.2% although there was significant variation between centres and PCT/HB areas. The growth rate from 2008 to 2009 for prevalent patients by treatment modality in the UK was 4.2% for haemodialysis (HD), a fall of 7.2% for peritoneal dialysis (PD) and a growth of 4.4% with a functioning transplant. There has been a slow but steady decline in the proportion of PD patients from 2000 onwards. Median RRT vintage was 5.4 years. The median age of prevalent patients was 57.7 years (HD 65.9 years, PD 61.2 years and transplant 50.8 years). For all ages, prevalence rates in males exceeded those in females: peaks for males were in the 75–79 years age group at 2,632 pmp and for females in the 70–74 years age group at 1,445 pmp. The most common identifiable renal diagnosis was biopsy-proven glomerulonephritis (16.0%), followed by diabetes (14.7%). Transplantation was the most common treatment modality (48%), HD in 44% and PD 8%. However, HD was increasingly common with increasing age and transplantation less common. Conclusions: The HD and transplant population continued to expand whilst the PD population contracted. There were national, regional and dialysis centre level variations in prevalence rates. This has implications for service planning and ensuring equity of care for RRT patients.

Chapter 6 Survival and causes of death of UK adult patients on renal replacement therapy in 2010: national and centre-specific analyses.

Introduction: These analyses examine a) survival from the start of renal replacement therapy (RRT), based on the total incident UK RRT population reported to the UK Renal Registry, including the 18% who started on PD and the 7% who received a pre-emptive transplant and b) survival of prevalent patients. Changes in survival between 1997 and 2009 are also reported. Methods: Survival of incident patients (starting RRT during 2009) was calculated both from the start of RRT and from 90 days after starting RRT, both with and without censoring at transplantation. Survival of prevalent dialysis patients was calculated to exclude patients once they were transplanted. Both Kaplan-Meier and Cox adjusted models were used to calculate survival. Causes of death were analysed for both groups. Relative risk of death was calculated compared with the general UK population. Results: The 2009 unadjusted 1 year after 90 day survival for patients starting RRT was 86.6% (87.3% in 2008). In incident patients aged 18–64, the unadjusted 1 year survival had increased from 86.0% in 1997 to 91.3% in 2009. In incident patients aged 565, unadjusted 1 year survival had improved from 64.1% to 76.2%. There were no survival differences between genders. The relative risk of death compared to the general population decreased from 25 times at age 30–34 to 2.7 times at age 85þ. Cause of death data completeness has improved 18% since last year. Cardiac disease is the most common cause of death in prevalent dialysis patients and malignancy most frequent in prevalent transplant patients. Conclusions: Survival of patients starting RRT has improved for all ages since 1997. The frequency of cardiac disease as the cause of death has decreased since 1997.

UK Renal Registry 13th Annual Report (December 2010): Chapter 15: UK renal centre survey results 2010: RRT incidence and use of home dialysis modalities.

Introduction: RRT incidence rates and the proportion of patients using a home dialysis modality (peritoneal or home haemodialysis) varies widely between centres and persists even after area differences in age, ethnicity and social deprivation structure are taken into account. A nationwide survey was undertaken to identify possible drivers of this variation. Methods: A systematic literature review followed by a two-stage Delphi consensus technique was employed to identify renal centre characteristics and practice patterns that may be important in determining either RRT incidence or home modality usage. Results: All 72 (100%) of UK adult renal centres responded. Questions about staffing numbers, interface with primary care, interface with other secondary care sites, capacity within the HD programme, constituents of pre-dialysis education programmes, conservative management programmes, range of treatments available, dialysis access and training and physician attitudes to home modalities were included. Conclusions: There was wide variation in practice patterns and centre characteristics across the UK. Overall, physician enthusiasm for home dialysis modalities was greater than the actual usage of home dialysis.

UK Renal Registry 13th Annual Report (December 2010): Chapter 1: UK RRT incidence in 2009: national and centre-specific analyses.

Introduction: This chapter describes the characteristics of adult patients starting renal replacement therapy (RRT) in the UK in 2009 and the acceptance rates for RRT in Primary Care Trusts and Health Boards (PCT/HBs) in the UK. Methods: The basic demographics and clinical characteristics are reported on patients starting RRT from all UK renal centres. Late presentation, defined as time between first being seen by a nephrologist and start of RRT being <90 days was also studied. Age and gender standardised ratios for acceptance rates in PCT/HBs were calculated. Results: In 2009, the incidence rate in the UK and England was 109 per million population (pmp). Acceptance rates in Scotland (104 pmp), Northern Ireland (88 pmp) and Wales (120 pmp) had all fallen although Wales still remained the country with the highest acceptance rate. There were wide variations between PCT/HBs with respect to the standardised ratios. The median age of all incident patients was 64.8 years (IQR 50.8, 75.1). For transplant centres this was 63.0 years (IQR 49.0, 74.2) and for non-transplanting centres 66.3 years (IQR 52.6, 75.9). The median age for non-Whites was 57.1 years. Diabetic renal disease remained the single most common cause of renal failure (25%). By 90 days, 69.1% of patients were on haemodialysis, 17.7% on peritoneal dialysis, 6.7% had had a transplant and 6.5% had died or stopped treatment. The mean eGFR at the start of RRT was 8.6 ml/min/1.73 m2 which was similar to the previous two years. Late presentation (<90 days) has fallen from 27% in 2004 to 19% in 2009. There was no relationship between social deprivation and presentation pattern. Conclusions: Acceptance rates have fallen in Northern Ireland, Scotland and Wales whilst they have plateaued in England over the last four years. Wales continued to have the highest acceptance rate of the countries making up the UK.

Chapter 5: Demography of the UK Paediatric Renal Replacement Therapy Population in 2009

Aims: To describe the demographics of the paediatric RRT population under the age of 16 years in the UK and to analyse changes in demography with time. Methods: Extraction and analysis of data from the UK Renal Registry (UKRR). Results: There were 751 children <16 years old with established renal failure (ERF) in the UK in December 2009. The reported prevalence under the age of 16 years was 65 per million age related population (pmarp) and the reported incidence 9.3 pmarp. The incidence and prevalence for South Asian patients was much higher than that of the White and Black populations. Of the patients for whom a primary renal diagnosis had been reported, renal dysplasia±reflux was the most common cause of ERF accounting for 34.0% of prevalent cases. There has been growth in treatment numbers in all paediatric renal centres between 1995 and 2010. Whilst the rate of transplantation within 90 days of commencing RRT has remained at around 25–30% of patients, the use of HD has increased by 4% at the expense of PD. Conclusions: The paediatric ERF population continued to expand with a slow increase in both incidence and prevalence rates. The high incidence in patients from ethnic minority groups will lead to a greater proportion of the population being from these groups in time. To maintain the high proportion of engrafted patients it will be necessary to encourage living donation in the ethnic minority population.

How much of the regional variation in RRT incidence rates within the UK is explained by the health needs of the general population

BACKGROUND Variation in end-stage renal disease treatment rates in the UK persist after adjustment for socio-demographic factors. METHODS UK-wide ecological study using population socio-demographic factors, health status characteristics and access to health services factor in to explain the incidence of renal replacement therapy (RRT). RESULTS There was a 6% higher incidence rate of RRT per standard deviation (SD) increase in area diabetes prevalence after adjustment for area level socio-economic deprivation status and the proportion of non-white residents [incidence rate ratio adjusted (IRR adjusted) 1.06 (95% confidence interval 1.03,1.09), P < 0.001]. A 3% lower-adjusted RRT incidence rate was seen with each SD higher proportion of diabetics achieving an HbA1c of <7.5% [IRR 0.97 (0.94, 1.00), P = 0.03]. Hypertension prevalence was independently associated with an 8% higher RRT incidence rate per SD increase [IRR adjusted 1.08 (1.04, 1.11), P < 0.001] and an SD increase in life expectancy in an area was independently associated with 7% lower RRT incidence rate [IRR adjusted 0.93 (0.91, 0.96), P < 0.001]. An SD increase in premature cardiovascular (CV) mortality rate in an area was also independently associated with RRT incidence rates [IRR adjusted 1.06 (1.03, 1.09), P < 0.001]. Rates of coronary artery bypass grafting (CABG)/angioplasty and knee replacement were positively associated with RRT incidence, but mammography uptake was not associated. In total, 31% of the regional variation in RRT incidence could be explained by these factors. CONCLUSIONS Diabetes prevalence, the proportion of diabetics achieving good glycaemic control, hypertension prevalence, life expectancy, premature CV mortality, CABG/angioplasty and knee replacement rates were all associated with RRT incidence. A third of the regional variation in RRT incidence between areas can be explained by these demographic, health and access to health services factors.

UK Renal Registry 12th Annual Report : Chapter 10 : Biochemistry profile of patients receiving dialysis in the UK in 2008 : national and centre-specific analyses

Introduction: The UK Renal Association Clinical Practice Guidelines include clinical performance measures for biochemical parameters in dialysis patients [1]. The UK Renal Registry (UKRR) annually audits dialysis centre performance against these measures as part of its role in promoting continuous quality improvement. Methods: Cross sectional performance analyses were undertaken to compare dialysis centre achievement of clinical performance measures for prevalent haemodialysis (HD) and peritoneal dialysis (PD) cohorts in 2008. The biochemical variables studied were phosphate, adjusted calcium, calcium phosphate product, parathyroid hormone, bicarbonate, total cholesterol and HbA1c. In addition, longitudinal analyses were performed (2000–2008) to show changes in achievement of clinical performance measures over time. Results: Serum phosphate was between 1.1 and 1.8 mmol/L in 55% of HD and 64% of PD patients, which was similar to 2007. There was a fall in overall mean phosphate concentration to 1.55 mmol/L. A revised adjusted serum calcium target of 2.2–2.5 mmol/L was achieved by 63% of HD and 65% of PD patients. For comparison, the previous target of 2.2–2.6 mmol/L was achieved by 74% and 78% respectively, a figure little changed since 2005. The downward trend in serum calcium results evident for the previous nine years appears to have halted. The calcium phosphate target of <4.8 mmol2/L2 was achieved by 84% of HD and 87% of PD patients, continuing the steady improvement over the past nine years and reflecting the downward trend in phosphate results. As in previous years, a minority of patients achieved the PTH target range of 16–32 pmol/L and there was considerable heterogeneity between centres. Although analytical and biological variability may have contributed to this, centres achieving the standards relating to one mineral parameter tended to achieve the standards in others suggesting that treatment factors were also relevant. The audit measure for bicarbonate was achieved in 71% of HD and 82% of PD patients. Eighty-five percent of HD patients and 69% of PD patients achieved a value for total cholesterol <5 mmol/L. This was the first year that HbA1c has been audited. Overall, 43% of diabetic dialysis patients exceeded the target of 7.5% HbA1c and there was considerable variation between centres. Conclusion: There is wide variation between centres in attainment of biochemical performance measures. There is some evidence in bone mineral metabolism that centres performing well in one variable are more likely to also meet the other standards. The inter-centre variation may be explained in part by laboratory practices and case mix but probably also represents variation in practice and in effectiveness of processes of care. Apart from glycaemic control there are a number of analytical and clinical factors that affect HbA1c that would be worthy of further investigation as a cause of variability.

UK Renal Registry 18th Annual Report 2015

The UK Renal Registry (UKRR) continues to provide a national source of NHS healthcare data on patients dependent on renal replacement therapy (RRT) across the four nations. Using electronic reporting and substantial integration across the 71 adult and 13 paediatric renal centres independent audit and analysis of dialysis and transplant activity and care across the UK is provided. The UKRR is part of the UK Renal Association and is funded directly by participating renal centres through an annual capitation fee per patient per annum, currently £19 or 0.01% of annual RRT running costs. The UKRR remains relatively unique amongst renal registries in publishing both centre-specific analyses of indicators of quality of care, such as haemoglobin and also ageadjusted survival statistics for each renal centre [1].