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.

Assessing Consensus Between UK Renal Clinicians on Listing for Kidney Transplantation: A Modified Delphi Study.

BACKGROUND: It is well recognized that there is significant variation between centers in access to kidney transplantation. In the absence of high-grade evidence, it is unclear whether variation is due to patient case mix, other center factors, or individual clinician decisions. This study sought consensus between UK clinicians on factors that should influence access to kidney transplantation. METHODS: As part of the Access to Transplantation and Transplant Outcome Measures project, consultant nephrologists and transplant surgeons in 71 centers were invited to participate in a Delphi study involving 2 rounds. During rounds 1 and 2, participants rated their agreement to 29 statements covering 8 topics regarding kidney transplantation. A stakeholder meeting was used to discuss statements of interest after the 2 rounds. RESULTS: In total, 122 nephrologists and 16 transplant surgeons from 45 units participated in rounds 1 and 2. After 2 rounds, 12 of 29 statements reached consensus. Fifty people participated in the stakeholder meeting. After the stakeholder meeting, a further 4 statements reached agreement. Of the 8 topics covered, consensus was reached in 6: use of a transplant protocol, patient age, body mass index, patient compliance with treatment, cardiac workup, and use of multidisciplinary meetings. Consensus was not reached on screening for malignancy and use of peripheral Doppler studies. CONCLUSIONS: The Delphi process identified factors upon which clinicians agreed and areas where consensus could not be achieved. The findings should inform national guidelines to support decision making in the absence of high quality evidence and to guide areas that warrant future research.

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.

UK Renal Registry 18th Annual Report: Chapter 3 Demographic and Biochemistry Profile of Kidney Transplant Recipients in the UK in 2014: National and Centre-specific Analyses.

There was a 2% fall in overall renal transplant numbers in 2014, with a significant fall in kidney donation from donors after circulatory death (10%). In 2014, death-censored renal transplant failure rates in prevalent patients were similar to previous years at 2.4% per annum. Transplant patient death rates remained stable at 2.3 per 100 patient years. The median age of incident and prevalent renal transplant patients in the UK was 50.6 and 53.3 years respectively. The median eGFR of prevalent renal transplant recipients was 52.5 ml/min/1.73 m2. The median eGFR of patients one year after transplantation was 57.4 ml/min/1.73 m2 post live transplant, 53.6 ml/min/1.73 m2 post brainstem death transplant and 50.1 ml/min/1.73 m2 post circulatory death transplant. In 2014, 13% of prevalent transplant patients had eGFR ,30 ml/min/1.73 m2. The median decline in eGFR slope beyond the first year after transplantation was −0.48 ml/min/1.73 m2/year.In 2014, malignancy (26%) and infection (24%) remained the commonest causes of death in patients with a functioning renal transplant.

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.

Early Requirement for RRT in Children at Presentation in the United Kingdom: Association with Transplantation and Survival.

BACKGROUND AND OBJECTIVES: We evaluated rates and factors associating with late referral (LR) and describe association of LR with access to renal transplantation and patient survival in children in the United Kingdom. Early requirement of RRT within 90 days of presentation to a pediatric nephrologist was classed as a LR, and those >90 days as an early referral (ER). DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We included patients who commenced RRT, aged ≥3 months and <16 years, from 1996 to 2012. RESULTS: Of 1603 patients, 25.5% (n=408) were LR, of which 75% commenced RRT in <30 days following presentation. Those with LR were more likely to be older at presentation, female, and black. The primary renal disease in LR was more likely to be glomerular disease (odds ratio [OR], 1.6; 95% confidence interval [95% CI], 1.12 to 2.29), renal malignancy and associated diseases (OR, 4.11; 95% CI, 1.57 to 10.72), tubulo-interstitial diseases (OR, 2.37; 95% CI, 1.49 to 3.78), or an uncertain renal etiology (OR, 5.75; 95% CI, 3.1 to 10.65). Significant differences in rates of transplantation between LR and ER remained up to 1-year following commencement of dialysis (21% versus 61%, P<0.001) but with no differences for donor source (33.3% and 35.3% living donor in LR and ER respectively, P=0.55). The median (interquartile range) follow-up time was 4.8 years (2.9-7.6). There were 55 deaths with no statistically significant difference in survival in the LR group compared with the ER group (hazard ratio, 1.30; 95% CI, 0.7 to 2.3; P=0.40). CONCLUSIONS: We found that 25% of children starting RRT in the United Kingdom receive a LR to pediatric renal services, with little change observed over the past two decades. Those with LR are unable to benefit from pre-emptive transplantation and require longer periods of dialysis before transplantation. There is an urgent need to understand causes of avoidable LR and develop strategies to improve kidney awareness more widely among health care professionals looking after children.

Access to Transplantation and Transplant Outcome Measures (ATTOM): study protocol of a UK wide, in-depth, prospective cohort analysis.

INTRODUCTION: There is significant intercentre variability in access to renal transplantation in the UK due to poorly understood factors. The overarching aims of this study are to improve equity of access to kidney and kidney-pancreas transplantation across the UK and to optimise organ allocation to maximise the benefit and cost-effectiveness of transplantation. METHODS AND ANALYSIS: 6844 patients aged 18-75 years starting dialysis and/or receiving a transplant together with matched patients active on the transplant list from all 72 UK renal units were recruited between November 2011 and March 2013 and will be followed for at least 3 years. The outcomes of interest include patient survival, access to the transplant list, receipt of a transplant, patient-reported outcome measures (PROMs) including quality of life, treatment satisfaction, well-being and health status on different forms of renal replacement therapy. Sociodemographic and clinical data were prospectively collected from case notes and from interviews with patients and local clinical teams. Qualitative process exploration with clinical staff will help identify unit-specific factors that influence access to renal transplantation. A health economic analysis will explore costs and outcomes associated with alternative approaches to organ allocation. The study will deliver: (1) an understanding of patient and unit-specific factors influencing access to renal transplantation in the UK, informing potential changes to practices and policies to optimise outcomes and reduce intercentre variability; (2) a patient-survival probability model to standardise access to the renal transplant list and (3) an understanding of PROMs and health economic impact of kidney and kidney-pancreas transplantation to inform the development of a more sophisticated and fairer organ allocation algorithm. ETHICS AND DISSEMINATION: The protocol has been independently peer reviewed by National Institute for Health Research (NIHR) and approved by the East of England Research Ethics Committee. The results will be published in peer-reviewed journals and presented at conferences.

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 17th Annual Report: Chapter 3 Demographic and Biochemistry Profile of Kidney Transplant Recipients in the UK in 2013: 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 2013 was the use of donors after brainstem death. The death-censored graft failure rate was similar to previous years at 2.4% and the transplant patient death rates remained stable at 2.4 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 13.4% with an eGFR,30 ml/min/1.73 m2 and 1.7% with an eGFR ,15 ml/min/1.73 m2. Of those with CKD stage 5T, 32.4% had haemoglobin concentrations ,100 g/L 28.4% phosphate concentrations 51.7 mmol/L and 16.8% adjusted calcium concentrations 52.5 mmol/L. Infection (26%) and malignancy (24%)remained amongst the commonest causes of death inpatients 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 17th Annual Report: Chapter 4 Demography of the UK Paediatric Renal Replacement Therapy Population in 2013.

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 1999­2003 to 18.4% in 2009­2013. 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 17th Annual Report: Chapter 9 Clinical, Haematological and Biochemical Parameters in Patients Receiving Renal Replacement Therapy in Paediatric Centres in the UK in 2013: National and Centre-specific Analyses.

BACKGROUND: The Paediatric Registry analyses renal replacement therapy (RRT) data in children. All 13 UK paediatric nephrology centres submit electronic data. AIMS: To provide centre specific data and to determine adherence to relevant audit standards. METHODS: Data analysis to calculate summary statistics and achievement of an audit standard. RESULTS: The median height z-score for children on dialysis was -2.0 and for children with a functioning transplant -1.3. Children transplanted before age 11 years improved their height z score subsequently, whereas those >11 maintained their height z-score, with all transplanted patients having a similar height z-score after 3 years of starting RRT.The median weight z-score for children on dialysis was -1.2, and for children with a functioning transplant -0.2.Of those with data, 75% of the prevalent paediatric RRT population had .1 risk factors for cardiovascular disease, with 1 in 10 having all three risk factors evaluated. For transplant patients, 76% achieved the systolic blood pressure (SBP)standard and 91% achieved the haemoglobin standard. For haemodialysis patients, 53% achieved the SBP standard,66% the haemoglobin standard, 84% the calcium standard,43% the phosphate standard and 43% achieved the parathyroid hormone (PTH) standard. For peritoneal dialysis patients, 61% achieved the SBP standard, 83% the haemoglobin standard, 71% the calcium standard, 56% the phosphate standard and 36% achieved the PTH standard. CONCLUSIONS: Quarterly data collection will improve quality and reporting. Continued focus on improving height and avoiding obesity is needed. Awareness and management of cardiovascular risk is an important long term strategy.

UK Renal Registry 17th Annual Report: Chapter 11 Centre Variation in Access to Renal Transplantation in the UK (2008-2010).

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 2008 and 31st December 2010 from 71 renal centres were considered for inclusion. The cohort was followed until 31st December 2012 (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 ina non-transplanting renal centre was less likely to be registered for transplantation (OR 0.74, 95% CI 0.68­0.81) or receive a transplant from a donor after cardiac death or a living kidney donor (OR 0.75, 95% CI 0.67­0.84) 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 0.93, 95% CI 0.78 to 1.10). CONCLUSION: There was wide variation in access to kidney transplantation between UK renal centres which cannot be explained by differences in case mix.

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 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 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 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 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.