Rishi Pruthi

UK Renal Registry 17th Annual Report: Chapter 1 UK Renal Replacement Therapy Incidence in 2013: National and Centre-specific Analyses

INTRODUCTION This chapter describes the characteristics of adult patients starting renal replacement therapy (RRT) in the UK in 2013 and the incidence rates for RRT by Clinical Commissioning Groups and Health Boards (CCG/HBs) in the UK. METHODS Basic demographic and clinical characteristics,including presentation time (time between first being seen by a nephrologist and start of RRT), and age/gender standardised incidence ratios in CCG/HBs, are reported on patients starting RRT at all UK renal centres. RESULTS In 2013, RRT was started in 7,006 patients across the UK,with an incidence rate similar to 2012 at 109 per million population (pmp). There were wide variations between CCG/HBs in standardised incidence ratios. The median age for White patients was 66.0 and for non-White patients 57.0 years. Diabetic renal disease remained the single most common cause of renal failure (25%). By 90 days,66.1% of patients were on haemodialysis (HD), 19.0% on peritoneal dialysis (PD), 9.5% had a functioning transplant and 5.3% had died or stopped treatment. There continued to be variability between centres in the use of PD as an initial treatment. The mean eGFR at the start of RRT was 8.5 ml/min/1.73 m2 similar to previous years. Late presentation(,90 days) fell from 23.9% in 2006 to 18.4% in 2013. Fifty-one percent of patients who started on HD had died within five years of starting. This compared to 33% and 5% for those starting on PD or transplant respectively. CONCLUSIONS The incidence of new patients starting RRT in the UK has remained largely unchanged for almost 10 years in contrast to the rising numbers of prevalent patients (+48% since 2003). The year on year increase in pre-emptive transplantation is encouraging but the variability between centres in the percentages starting on PD should be explored further.

UK Renal Registry 16th Annual Report: Chapter 2 UK RRT Prevalence in 2012: National and Centre-specific Analyses

Introduction: This chapter describes the characteristics of adult patients on renal replacement therapy (RRT) in the UK in 2012. Methods: Data were electronically collected from all 71 renal centres within the UK. A series of crosssectional and longitudinal analyses were performed to describe the demographics of prevalent RRT patients in 2012 at centre and national level. Results: There were 54,824 adult patients receiving RRT in the UK on 31st December 2012. The UK adult prevalence of RRT was 861 pmp. This represented an annual increase in absolute prevalent numbers of approximately 3.7%, although there was variation between centres and Primary Care and Health Board areas. The actual number of patients increased across all modalities: 2.3% haemodialysis (HD), 0.3% peritoneal dialysis (PD) and 5.6% for those with a functioning transplant. The number of patients receiving home HD has increased by 19.3% since 2011. Median RRT vintage for patients on HD was 3.4 years, PD 1.7 years and for those patients with a transplant, 10.2 years. The median age of prevalent patients was 58 years (HD 66 years, PD 63 years, transplant 52 years) compared to 55 years in 2005. 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) (18.8%). Transplantation was the most common treatment modality (50.4%) Conclusions: The HD and transplant population continued to expand; the decline in the size of the prevalent PD population has plateaued. There were national, regional and dialysis centre level variations in prevalence rates. Prevalent patients were on average three years older than the prevalent RRT cohort 7 years ago. This has continued implications for service planning and ensuring equity of care for RRT patients.

UK Renal Registry 17th Annual Report: Chapter 3 Demographic and Biochemistry Profile of Kidney Transplant Recipients in the UK in 2013: National and Centre-specific Analyses

Introduction: Outcomes following renal transplantation are usually reported as graft or patient survival. However, graft function, haemoglobin and blood pressure are also importantIntroduction: Outcomes following renal transplantation are usually reported as graft or patient survival. However, graft function, haemoglobin and blood pressure are also important measures of quality of care. Methods: Transplant activity and incident graft survival data were obtained from NHS Blood and Transplant (NHSBT), laboratory and clinical variables and prevalent survival data were obtained from the UK Renal Registry (UKRR). Data were analysed separately for prevalent and one year post-transplant patients. Results: Increasing live and non-heartbeating donors were responsible for the increasing transplant activity. Transplant waiting list numbers continued to rise by 8%. Graft failure occurred in 3.2% of prevalent transplant patients. Death rates remained stable at 2.3/100 patient years. Malignancy accounted for 21% of these deaths. There was centre variation in outcomes such as eGFR and haemoglobin in prevalent and 1 year post-transplant recipients. Analysis of prevalent transplants by chronic kidney disease stage showed 16% with eGFR <30 and 2.2% <15. Of those in stage 5T, 26% had Hb <10 g/dl, 27% phosphate ≥ 1.8 mmol/L and 50% an iPTH ≥ 32 pmol/L. These patients were less likely to achieve the UK standards in comparison to CKD5 dialysis patients. Conclusion: Wide variations in clinical and biochemical outcomes may be secondary to variations in the care administered to transplant recipients across the UK.

UK Renal Registry 15th annual report: Chapter 4 demography of the UK paediatric renal replacement therapy population in 2011.

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: Data were collected from all 13 paediatric renal centres within the UK. A series of cross-sectional and longitudinal analyses were performed to describe the demographics of paediatric RRT patients. Results: A total of 856 children and young people under 18 with ERF were receiving treatment at paediatric nephrology centres in 2011. At the census date, 80.1% had a functioning transplant, 10.5% were receiving peritoneal dialysis (PD) and 9.4% were receiving haemodialysis (HD). In patients aged <16 years the prevalence of ERF was 56.8 pmarp and the incidence 8.3 pmarp. Analysis of trends over the last 15 years shows that both incidence and prevalence are increasing. A third of the prevalent patients had one or more reported comorbidities. At transfer to adult services, 86% of patients had a functioning renal transplant. Pre-emptive transplantation was seen to occur in 31% of children starting RRT under 16 years, with lower rates seen in girls and ethnic minorities. Survival in childhood amongst children starting RRT was the lowest in those aged less than 2 years. Conclusions: The data provided in this report show increasing trends over 15 years in the incidence and prevalence of established renal failure. This is important for the planning of the provision of care for children needing renal replacement therapy. Further research is required to understand the gender and ethnic differences in pre-emptive transplantation rates and the reduced survival amongst children aged less than 2 years.

UK Renal Registry 14th Annual Report

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: Data were collected from all 13 paediatric renal centres within the UK. A series of cross-sectional and longitudinal analyses were performed to describe the demographics of prevalent paediatric RRT patients. Results: A total of 870 children and young people under 18 with ERF were receiving treatment at paediatric nephrology centres in 2010. At the census date, 76.7% had a functioning transplant, 14.3% were receiving peritoneal dialysis (PD) and 9.0% were receiving haemodialysis (HD). In patients aged <16 years the prevalence of ERF was 59.3 pmarp and the incidence 8.1 pmarp. Analysis of trends over the last 15 years shows that both incidence and prevalence are increasing with the most marked increases in children aged 12–16 years and in ethnic minority groups. A third of the patients have one or more reported comorbidities. At transfer to adult services, 84.9% of patients had a functioning renal transplant. Conclusions: The data provided in this report show increasing trends over 15 years in the incidence and prevalence of established renal failure. This is important for the planning of the provision of care for children needing renal replacement therapy. The inclusion this year of an analysis of the patients transferring to adult services may assist in developing care pathways for this vulnerable group.

UK Renal Registry 15th annual report: Chapter 2 UK RRT prevalence in 2011: national and centre-specific analyses.

Introduction: This chapter describes the characteristics of adult patients on renal replacement therapy (RRT) in the UK in 2011. 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 (HB) in Scotland (PCT/HB areas). 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 2011 at centre and national level. Age and gender standardised ratios for prevalence rates in PCT/ HBs were calculated. Results: There were 53,207 adult patients receiving RRT in the UK on 31st December 2011. The UK adult prevalence of RRT was 842 pmp. This represented an annual increase in prevalent numbers of approximately 4%, although there was variation between centres and PCT/HB areas. The growth rate from 2010 to 2011 for prevalent patients by treatment modality in the UK was an increase of 1.7% for haemodialysis (HD), a fall of 2.2% for peritoneal dialysis (PD) and an increase of 4.7% with a functioning transplant. There has been a slow but steady decline in the proportion of dialysis patients receiving PD since 2000. In contrast, the number of patients receiving home HD has increased 16% since 2010. Median RRT vintage for patients on HD was 3.3 years, PD 1.8 years and for those patients with a transplant, 10.3 years. The median age of prevalent patients was 58.2 years (HD 66.5 years, PD 62.7 years, transplant 51.7 years) compared to 55 years in 2000. For all ages the prevalence rate in men exceeded that in women, peaking in age group 75-79 years at 2,918 pmp in males. For females the peak was in age group 65-69 years at 1,460 pmp. The most common recorded renal diagnosis was glomerulonephritis (biopsy proven/not biopsy proven) (19%), followed by uncertain (18%). Transplantation was the most common treatment modality (48.6%), HD in 43.9% and PD 7.6%. 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. Prevalent patients were on average three years older than 10 years ago. This has implications for service planning and ensuring equity of care for RRT patients.

UK Renal Registry 16th annual report: chapter 4 demography of patients waitlisted for renal transplantation in the UK: national and centre-specific analyses.

Introduction: For suitable patients, renal transplantation is considered the optimal modality of renal replacement therapy, with availability of donor organs limiting the number of transplants undertaken. The 2006 kidney allocation policy was developed to ensure equity of allocation to patients on the transplant waiting list, whilst still achieving a good donor/recipient match. This study aims to describe the characteristics of the kidney transplant waiting list and variations in median waiting times. Methods: Demographics and clinical characteristics of all patients listed for a kidney only transplant in the UK on 1st January 2011 were examined. Renal unit variations were explored. Patients listed between January 2006 and December 2009 were included in analysis of waiting times to transplant. Results: At the beginning of 2011, there were 6,699 patients registered active for kidney only transplant in UK; a prevalence rate of 107 pmp. The median age of prevalent listed patients was 53 years, with 8% aged 70 or above. Of the patients listed, 84% had started renal replacement therapy (RRT), 59% were male, 28% were from ethnic minorities, 50% had blood group type O, 28% were defined as difficult to HLA match and 23% were highly sensitised (calculated HLA antibody reaction frequency 85%). Median waiting time to transplant was 38 months. Waiting time was shorter for White patients (36 months) compared to Asian or Black patients (46 months), and was doubled in highly sensitised compared to un-sensitised patients. Conclusions: Intercentre variation was observed in the rate of wait-listing and in the proportion of listed patients across different ethnic groups, age, blood groups and level of sensitisation. This may reflect differences in baseline population characteristics as well as individual centre practice patterns. Median waiting times differ significantly across blood groups, degree of sensitisation and ethnic group.

UK Renal Registry 18th Annual Report: 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

Introduction: The British Association for Paediatric Nephrology Registry (BAPN) was established to analyse data related to renal replacement therapy (RRT) in children. The registry receives data from the 13 paediatric nephrology centres in the UK. This chapter aims to provide centre specific data so that individual centres can reflect on the contribution that their data makes to the national picture and to determine the extent to which their patient parameters meet nationally agreed audit standards for the management of children with established renal failure (ERF). Methods: Data returns included a mixture of electronic (92%) and paper (8%) returns. Data were analysed to calculate summary statistics and where applicable the percentage achieving an audit standard. The standards used were those set out by the Renal Association and the National Institute for Health and Clinical Excellence. Results: Anthropometric data confirmed that children receiving RRT were short compared to healthy peers. Amongst patients with a height of <2SD between 2001 and 2012, 29.2%were receiving growth hormone if they were on dialysis compared to 11.9% if they had a functioning transplant. Prevalence rates of overweight and obese status in children with ERF remain concerningly high. Blood pressure control remained challenging with wide inter-centre variation although this was significantly better in children with a functioning transplant. Over a quarter of haemodialysis patients and 17.3% of peritoneal dialysis patients were anaemic, compared to only 8.3% of transplanted patients. ESA use in the dialysis population exceeded 90% amongst anaemic patients. The control of renal bone disease remained challenging. Conclusions: Optimising growth and reducing prevalent excess weight in children on RRT remains challenging. The likelihood of complete electronic reporting in the near future with plans for quarterly reporting in the format of the recently finalised NEW paediatric dataset will hopefully improve quality of data and their reporting, allowing improvements in patient care.

UK Renal Registry 17th Annual Report

AIMS To describe the demographics of the paediatric renal replacement therapy (RRT) population under the age of 18 years in the UK and to analyse changes in demography over time. METHODS Data were collected electronically from all 13 paediatric renal centres within the UK. A series of cross-sectional and longitudinal analyses were performed to describe the demographics of paediatric RRT patients. RESULTS A total of 891 children and young people under 18 with established renal failure (ERF) were receiving treatment at paediatric nephrology centres in 2013. At the census date, 80.2% had a functioning transplant, 11.7%were receiving haemodialysis (HD) and 8.1% were receiving peritoneal dialysis (PD). In patients aged ,16 years the prevalence of ERF was 58.2 per million age related population(pmarp) and the incidence 9.3 pmarp. A third of the prevalent patients had one or more reported comorbidities.At transfer to adult services, 85.2% of patients had a functioning renal transplant. Pre-emptive transplantation was seen to occur in a third of children starting RRT under16 years, with lower rates seen in girls and ethnic minorities.Living donation as starting modality has continued to improve with an increase from 8.8% in 1999–2003 to 18.4% in 2009–2013. Survival in childhood amongst children starting RRT was the lowest in those aged less than two years. CONCLUSIONS We report continued improvement in data quality and electronic submission of data returns. The data provided in this report show relatively stable trends of incidence and prevalence in children with established renal failure.

UK Renal Registry 16th Annual Report: Chapter 6 Demographics and Outcomes of Patients from Different Ethnic Groups on Renal Replacement Therapy in the UK

Introduction: This chapter describes the patient characteristics and outcomes for the three main ethnic groups (White, South Asian, Black) on renal replacement therapy (RRT) in the UK. Methods: Data on patients (>18 years old) from all 71 UK adult renal centres starting RRT between 2003 and 2012 were considered. Scottish centres were excluded due to poor ethnicity data. Results: The age-gender standardized incidence ratio of RRT was higher (2-3 times) in regions with a high ethnic minority population compared to those with a low ethnic minority population. South Asian and Black patients were significantly younger than Whites; had more diabetes causing established renal failure and lived in more deprived areas. The proportion of patients with at least one comorbidity was greater amongst White patients compared to South Asian and Black patients. The proportion of patients starting PD and having preemptive transplantation was lower amongst both ethnic minorities. The attainment of various laboratory standards was comparable or better for the ethnic minorities compared to White patients except for calcium standard attainment (for South Asians) and haemodialysis dose attainment (for Black patients). Compared to White patients, both ethnic minorities had similar rates of listing for deceased donor kidney transplantation but had lower rates of transplantation once wait-listed, and lower rates of living kidney donor transplantation. One and five year kidney allograft adjusted survival was poorer for Black patients but similar for South Asians compared to White patients. Black and South Asian patients had a better adjusted survival on dialysis compared to White patients. Conclusions: The persistent high incidence of RRT, the better survival on dialysis and the poor access to kidney transplantation for South Asian and Black patients and early allograft loss for Black patients will impose a disproportionate demand on dialysis provision in those areas with a high ethnic minority population.