Long-term graft outcomes and patient survival are lower posttransplant in patients with a primary renal diagnosis of glomerulonephritis.

Glomerulonephritis (GN) is the primary diagnosis in 20% to 40% of patients receiving a renal transplant. Here we studied patient survival and graft outcomes in patients with GN transplanted in the UK. UK Renal Registry data were used to analyze patient survival and graft failure in incident transplant patients between 1997 to 2009 who had a diagnosis of primary GN, in comparison to patients transplanted with adult polycystic kidney disease (APKD) or diabetes. Multivariable regression analysis adjusted for age, sex, donor type, ethnicity, donor age, time on dialysis, human leukocyte antigen mismatch, cold ischemic time, and graft failure (for patient survival). Patients were followed up through December 2012. Of 4750 patients analyzed, 2975 had GN and 1775 APKD. Graft failure was significantly higher in membranoproliferative glomerulonephritis (MPGN) type II (hazard ratio: 3.5, confidence interval: 1.9-6.6), focal segmental glomerulosclerosis (2.4, 1.8-3.2), MPGN type I (2.3, 1.6-3.3), membranous nephropathy (2.0, 1.4-2.9), and IgA nephropathy (1.6, 1.3-2.0) compared to APKD. Survival was significantly reduced in patients with MPGN type II (4.7, 2.0-10.8), and those with lupus nephritis (1.8, 1.1-2.9). Overall graft failure for patients with GN was similar to those with diabetes. Thus, in comparison to outcomes in APKD, graft survival is significantly lower in most GNs, with variation in outcomes between different GNs. This information should assist in pretransplant counseling of patients. Further study is required to understand the reduced survival seen in lupus nephritis and MPGN type II, and to improve overall graft outcomes.

Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study.

BACKGROUND: There is variation in time to listing and rates of listing for transplantation between renal units in the UK. While research has mainly focused on healthcare organization, little is known about patient perspectives of entry onto the transplant waiting list. This qualitative study aimed to explore patients' views and experiences of kidney transplant listing. METHODS: Semi-structured interviews were conducted with patients aged under 75, who were on dialysis and on the transplant waiting list, not on the waiting list, undergoing assessment for listing or who had received a transplant. Patients were recruited from a purposive sample of nine UK renal units, which included transplanting and non-transplanting units and units with high and low wait-listing patterns. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Fifty-three patients (5-7 per renal unit) were interviewed. Patients reported that they had received little information about the listing process. Some patients did not know if they were listed or had found they were not listed when they had thought they were on the list. Others expressed distress when they felt they had been excluded from potential listing based on age and/or comorbidity and felt the process was unfair. Many patients were not aware of pre-emptive transplantation and believed they had to be on dialysis before being able to be listed. There was some indication that pre-emptive transplantation was discussed more often in transplant than non-transplant units. Lastly, some patients were reluctant to consider family members as potential donors as they reported they would feel 'guilty' if the donor suffered subsequent negative effects. CONCLUSIONS: Findings suggest a need to review current practice to further understand individual and organizational reasons for the renal unit variation identified in patient understanding of transplant listing. The communication of information warrants attention to ensure patients are fully informed about the listing process and opportunity for pre-emptive transplantation in a way that is meaningful and understandable to them.

UK Renal Registry 15th annual report: Chapter 3 demographic and biochemistry profile of kidney transplant recipients in the UK in 2011: national and centre-specific analyses.

INTRODUCTION: National transplant registries routinely focus on centre-specific patient and graft survival rates following renal transplantation. However other outcomes such as graft function (as measured by eGFR), haemoglobin and blood pressure are also important quality of care indicators. METHODS: Renal transplant activity, incident graft survival data and donor information were obtained from NHS Blood and Transplant. Laboratory and clinical variables and prevalent survival data were obtained from the UK Renal Registry. Data were analysed separately for prevalent and one year post-transplant patients. RESULTS: The only increase in transplant activity in 2011 was the use of donors after circulatory death. The death-censored graft failure rate was similar to previous years at 2.2% and the transplant patient death rates remained stable at 2.3 per 100 patient years. There was centre variation in outcomes including eGFR and haemoglobin in prevalent and 1 year post-transplant patients. Analysis of prevalent transplants by chronic kidney disease stage showed 13.6% with an eGFR <30 ml/min/1.73 m(2) and 1.7% with an eGFR <15 ml/min/1.73 m(2). Of those with CKD stage 5T, 34% had haemoglobin concentrations <10.0 g/dl, 19.8% phosphate concentrations ≥1.8 mmol/L and 7.1% adjusted calcium concentrations ≥2.6 mmol/L. Infection (23%), malignancy (21%), and cardiac disease (16%) remained amongst the commonest causes of death in patients with a functioning renal transplant. CONCLUSION: Significant variations in clinical outcomes (unadjusted for patient-specific variables) amongst kidney transplant recipients continued to exist in the UK and may reflect differences in healthcare delivery between renal centres.

UK Renal Registry 16th annual report: chapter 8 survival and cause of death of UK adult patients on renal replacement therapy in 2012: national and centre-specific analyses.

INTRODUCTION: These analyses examine: a) survival from the start of renal replacement therapy (RRT); b) survival amongst all prevalent dialysis patients alive on 31st December 2011; c) the cause of death for incident and prevalent patients and d) the projected life years remaining for patients starting RRT. Changes in survival between the 1997 and 2011 cohort are also reported. METHODS: Survival was calculated for both incident and prevalent patients on RRT. Survival of incident patients (starting RRT during 2011) was calculated both from the start of RRT and from 90 days after starting RRT, both with and without censoring at transplantation. Prevalent dialysis patients were censored at transplantation. Both Kaplan-Meier and Cox adjusted models were used to calculate survival. The relative risk of death was calculated and compared with the UK general population. RESULTS: The unadjusted 1 year after 90 day survival for patients starting RRT in 2011 was 87.5%, representing an increase from the previous year (87.3%). The age-adjusted one year survival (adjusted to age 60) of prevalent dialysis patients increased from 88.2% in the 2002 cohort to 89.7% in the 2011 cohort. Prevalent diabetic patient one year survival rose from 81.6% in the 2002 cohort to 84.9% in the 2011 cohort. The age-standardised mortality ratio for prevalent RRT patients compared with the general population was 16.6 for age group 35-39 and 2.7 at age 85+ years. In the prevalent RRT dialysis population, cardiovascular disease accounted for 22% of deaths, infection 17% and treatment withdrawal 19%. The median life years remaining for a 25-29 year old on RRT was 18.5 years and approximately 2.5 for a 75+ year old. CONCLUSIONS: Survival of patients starting RRT has improved in the 2011 incident cohort. The relative risk of death on RRT compared with the general population has fallen since 2001.

UK Renal Registry 16th annual report: chapter 3 demographic and biochemistry profile of kidney transplant recipients in the UK in 2012: national and centre-specific analyses.

INTRODUCTION: National transplant registries routinely focus on centre-specific patient and graft survival rates following renal transplantation. However other outcomes such as graft function (as measured by eGFR), haemoglobin and blood pressure are also important quality of care indicators. METHODS: Renal transplant activity, incident graft survival data and donor information were obtained from NHS Blood and Transplant. Laboratory and clinical variables and prevalent survival data were obtained from the UK Renal Registry. Data were analysed separately for prevalent and one year post-transplant patients. RESULTS: The main increase in transplant activity in 2012 was the use of donors after circulatory death. The death-censored graft failure rate was similar to previous years at 2.2% and the transplant patient death rates remained stable at 2.3 per 100 patient years. There was centre variation in outcomes including eGFR and haemoglobin in prevalent and 1 year posttransplant patients. Analysis of prevalent transplants by chronic kidney disease stage showed 13.7% with an eGFR <30 ml/min/1.73 m(2) and 1.7% with an eGFR <15 ml/min/1.73 m(2). Of those with CKD stage 5T, 33% had haemoglobin concentrations <100 g/L, 27.6% phosphate concentrations 1.7 mmol/L and 20.5% adjusted calcium concentrations 2.5 mmol/L. Infection (23%) and malignancy (20%) remained amongst the commonest causes of death in patients with a functioning renal transplant. CONCLUSIONS: Significant variations in clinical outcomes (unadjusted for patient specific variables) amongst kidney transplant recipients continued to exist in the UK and may reflect differences in healthcare delivery between renal centres.

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 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.

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 15th annual report: Chapter 9 centre variation in access to renal transplantation in the UK (2006-2008).

BACKGROUND: Renal transplantation is recognised as being the optimal treatment modality for many patients with established renal failure. This analysis aimed to explore inter-centre variation in access to renal transplantation in the UK. METHODS: Transplant activity and waiting list data were obtained from NHS Blood and Transplant, demographic and laboratory data were obtained from the UK Renal Registry. All incident RRT patients starting treatment between 1st January 2006 and 31st December 2008 from 72 renal centres were considered for inclusion. The cohort was followed until 31st December 2010 (or until transplantation or death, whichever was earliest). RESULTS: Age, ethnicity and primary renal diagnosis were associated with both accessing the kidney transplant waiting list and receiving a kidney transplant. A patient starting dialysis in a non-transplanting renal centre was less likely to be registered for transplantation (OR 0.80, 95% CI 0.74-0.87) or receive a transplant from a donor after cardiac death or a living kidney donor (OR 0.69, 95% CI 0.61-0.77) compared with patients cared for in transplanting renal centres. Once registered for kidney transplantation, patients in both transplanting and non-transplanting renal centres had an equal chance of receiving a transplant from a donor after brainstem death (OR 0.92, 95% CI 0.79-1.08). CONCLUSION: There was wide variation in access to kidney transplantation between UK renal centres which cannot be explained by differences in case mix.

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 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 15th annual report: Chapter 7 clinical, haematological and biochemical parameters in patients receiving renal replacement therapy in paediatric centres in the UK in 2011: national and centre-specific analyses.

BACKGROUND: The British Association for Paediatric Nephrology Registry 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. 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. METHODS: Data returns have been a mixture of electronic and paper 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 <2 SD between 2001 and 2011, 31% were receiving growth hormone if they were on dialysis compared to 10% if they had a functioning transplant. Blood pressure control remained challenging with wide inter-centre variation although this was significantly better in children with a functioning transplant. Over a third of haemodialysis patients and a quarter of peritoneal dialysis patients were anaemic, compared to only 7% of transplanted patients. ESA use in the dialysis population exceeded 90% amongst anaemic patients. The control of renal bone disease remained challenging. CONCLUSIONS: Optimizing growth in children on RRT remained challenging and the control of bone biochemistry in children on dialysis was imperfect. 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 16th annual report: chapter 7 demography of the UK paediatric renal replacement therapy population in 2012.

INTRODUCTION: 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 with time. METHODS: Data were collected from all 13 paediatric renal centres within the UK. A series of crosssectional and longitudinal analyses were performed to describe the demographics of paediatric RRT patients. RESULTS: A total of 861 children and young people under 18 with established renal failure (ERF) were receiving treatment at paediatric nephrology centres in 2012. At the census date, 80.2% had a functioning transplant, 10.6% were receiving haemodialysis (HD) and 9.2% were receiving peritoneal dialysis (PD). In patients aged <16 years the prevalence of ERF was 56.7 pmarp and the incidence 9.0 pmarp. A third of the prevalent patients had one or more reported comorbidities. At transfer to adult services, 81.5% of patients had a functioning renal transplant. Preemptive transplantation was seen to occur in a third of children starting RRT under 16 years, with lower rates seen in girls and ethnic minorities. Over the past 15 years for those referred early, there has been a rise in pre-emptive transplantation rates, rising from 26.2% in 1998-2002 to 36.3% in 2008-2012. Over the same period there has also been an increase in living donation from 7.1% to 18%. Survival in childhood amongst children starting RRT was the lowest in those aged less than two years. CONCLUSIONS: The findings of this report are similar to last year with continued improvement in data quality and electronic submission of data returns. The data provided in this report show slowly increasing trends of incidence and prevalence in children with established renal failure.

UK Renal Registry 16th annual report: chapter 13 clinical, haematological and biochemical parameters in patients receiving renal replacement therapy in paediatric centres in the uk in 2012: 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.

Chapter 9 Biochemical variables amongst UK adult dialysis patients in 2010: national and centre-specific analyses.

INTRODUCTION: The UK Renal Association clinical practice guidelines include clinical performance measures for biochemical variables in dialysis patients. 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 audit measures for prevalent haemodialysis (HD) and peritoneal dialysis (PD) cohorts in 2010. The biochemical variables studied were phosphate, adjusted calcium, parathyroid hormone, bicarbonate and total cholesterol. In addition longitudinal analyses were performed (2000-2010) to show changes in achievement of clinical performance measures over time. RESULTS: Fifty-six percent of HD and 69% of PD patients achieved a phosphate within the range recommended by the RA clinical practice guidelines. Seventy-five percent of HD and 76% of PD patients had adjusted calcium between 2.2-2.5 mmol/L. Twenty-eight percent of HD and 31% of PD patients had parathyroid hormone between 16- 32 pmol/L. Sixty percent of HD and 80% of PD patients achieved the audit measure for bicarbonate. There was significant inter-centre variation for all variables studied. CONCLUSIONS: The UKRR consistently demonstrates significant inter-centre variation in achievement of biochemical clinical audit measures. Understanding the causes of this variation is an important part of improving the care of dialysis patients in the UK.

Chapter 11 Clinical, haematological and biochemical parameters in patients receiving renal replacement therapy in paediatric centres in the UK in 2010: national and centre-specific analyses.

BACKGROUND: The British Association for Paediatric Nephrology Registry was established to analyse data related to renal replacement therapy (RRT) for children. The registry receives data from the 13 paediatric nephrology centres in the UK. AIM: 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. METHOD: Data returns have been a mixture of electronic and paper 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 are short compared to healthy peers. Amongst patients with a height z-score of <2SD between 2000 and 2010, 27% were receiving growth hormone if they were on dialysis compared to 10% if they had a functioning transplant. Blood pressure was higher in children receiving RRT than in healthy children with wide inter-centre variation. The percentage of patients achieving the treatment standards for haemoglobin and ferritin has gradually increased over the last decade, more noticeably in dialysis patients. Analysis by age showed that the proportion of children with a haemoglobin below the standard was greatest for the under 5 years age group irrespective of RRT modality. The control of renal bone disease remained challenging. CONCLUSIONS: Optimizing growth in children on RRT remains challenging and the control of bone biochemistry in children on dialysis is imperfect. However there is some room for optimism as this year's data shows an improving trend in the control of anaemia and systolic blood pressure.

Chapter 5 Demography of the UK paediatric renal replacement therapy population in 2010.

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.

Incidence, Risk Factors, and Effect on Allograft Survival of Glomerulonephritis Post-transplantation in a United Kingdom Population: Cohort Study.

Background: Post-transplant glomerulonephritis (PTGN) has been associated with inferior long-term allograft survival, and its incidence varies widely in the literature. Methods: This is a cohort study of 7,623 patients transplanted between 2005 and 2016 at four major transplant UK centres. The diagnosis of glomerulonephritis (GN) in the allograft was extracted from histology reports aided by the use of text-mining software. The incidence of the four most common GN post-transplantation was calculated, and the risk factors for disease and allograft outcomes were analyzed. Results: In total, 214 patients (2.8%) presented with PTGN. IgA nephropathy (IgAN), focal segmental glomerulosclerosis (FSGS), membranous nephropathy (MN), and membranoproliferative/mesangiocapillary GN (MPGN/MCGN) were the four most common forms of post-transplant GN. Living donation, HLA DR match, mixed race, and other ethnic minority groups were associated with an increased risk of developing a PTGN. Patients with PTGN showed a similar allograft survival to those without in the first 8 years of post-transplantation, but the results suggest that they do less well after that timepoint. IgAN was associated with the best allograft survival and FSGS with the worst allograft survival. Conclusions: PTGN has an important impact on long-term allograft survival. Significant challenges can be encountered when attempting to analyze large-scale data involving unstructured or complex data points, and the use of computational analysis can assist.

Inequity in Access to Transplantation in the United Kingdom.

BACKGROUND AND OBJECTIVES: Despite the presence of a universal health care system, it is unclear if there is intercenter variation in access to kidney transplantation in the United Kingdom. This study aims to assess whether equity exists in access to kidney transplantation in the United Kingdom after adjustment for patient-specific factors and center practice patterns. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In this prospective, observational cohort study including all 71 United Kingdom kidney centers, incident RRT patients recruited between November 2011 and March 2013 as part of the Access to Transplantation and Transplant Outcome Measures study were analyzed to assess preemptive listing (n=2676) and listing within 2 years of starting dialysis (n=1970) by center. RESULTS: Seven hundred and six participants (26%) were listed preemptively, whereas 585 (30%) were listed within 2 years of commencing dialysis. The interquartile range across centers was 6%-33% for preemptive listing and 25%-40% for listing after starting dialysis. Patient factors, including increasing age, most comorbidities, body mass index >35 kg/m2, and lower socioeconomic status, were associated with a lower likelihood of being listed and accounted for 89% and 97% of measured intercenter variation for preemptive listing and listing within 2 years of starting dialysis, respectively. Asian (odds ratio, 0.49; 95% confidence interval, 0.33 to 0.72) and Black (odds ratio, 0.43; 95% confidence interval, 0.26 to 0.71) participants were both associated with reduced access to preemptive listing; however Asian participants were associated with a higher likelihood of being listed after starting dialysis (odds ratio, 1.42; 95% confidence interval, 1.12 to 1.79). As for center factors, being registered at a transplanting center (odds ratio, 3.1; 95% confidence interval, 2.36 to 4.07) and a universal approach to discussing transplantation (odds ratio, 1.4; 95% confidence interval, 1.08 to 1.78) were associated with higher preemptive listing, whereas using a written protocol was associated negatively with listing within 2 years of starting dialysis (odds ratio, 0.7; 95% confidence interval, 0.58 to 0.9). CONCLUSIONS: Patient case mix accounts for most of the intercenter variation seen in access to transplantation in the United Kingdom, with practice patterns also contributing some variation. Socioeconomic inequity exists despite having a universal health care system.

Variation in Practice Patterns for Listing Patients for Renal Transplantation in the United Kingdom: A National Survey.

BACKGROUND: Despite the availability of guidelines for the evaluation of candidates for renal transplantation, variation in access to transplantation exists. This national survey investigates whether center variation exists in the assessment of patients for renal transplantation in the United Kingdom. METHODS: An online survey, informed by qualitative interviews, was distributed to all UK renal centers. This survey examined center approaches to chronic kidney disease service provision, transplant recipient assessment, education provision, and waitlisting decision making processes. Center reevaluation policies for patients already listed and priorities for future development were also examined. RESULTS: All 71 renal centers responded. Of these, 83% reviewed predialysis patients in a low clearance clinic. In 26% of the centers, transplantation was not discussed as a treatment option with all patients. Fourteen centers reported having a dedicated transplant assessment clinic, whereas 28% did not have a formal assessment protocol. Age was an exclusion criterion for listing in 3 centers, all of which had a cutoff at 75 years. Eighty-three percent of the centers excluded patients with a high body mass index. Cardiac investigations were risk-stratified in 90% of centers. Surgical involvement varied with 11% of centers listing patients without formal surgical review. There was no formal protocol in place to reevaluate listed patients in 62% of centers. CONCLUSIONS: There is wide variation in UK practice patterns for listing patients for renal transplantation, though its impact on access to transplantation is unclear. The extent to which center-specific and patient-specific factors affect access to transplantation requires further analysis in a prospective cohort of patients.