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Background: Quality of life (QOL) is important to patients with end stage renal disease and their partners. Despite the first 12 weeks being a critical time in the treatment pathway, limited research exists which examines how the transition onto dialysis impacts QOL. In this study we measured QOL in patients and their partners at pre-dialysis and over the first 12 weeks on dialysis to investigate QOL during this crucial period.Methods: Patients and their partners, recruited from 10 renal units in England, completed questionnaires at pre-dialysis (n = 166 participants, 83 couples), 6 weeks (n = 90 participants, 45 couples) and 12 weeks (n = 78, 39 couples) after starting dialysis. On each occasion participants completed a QOL questionnaire (WHOQOL-BREF). Multilevel modelling accommodated the nested structure of couples with repeated measures within participants. Three-level random intercept models estimated changes in WHOQOL general QOL and its four domains (Physical, Psychological, Social and Environment). Two-level random intercept models assessed the relationship between baseline clinical and socio-demographic variables with changes in general QOL.Results: Patients reported positive changes in general QOL from pre-dialysis to 6 weeks (β = 0.42, p < 0.001, 95% CI 0.19, 0.65) and from pre-dialysis to 12 weeks (β = 0.47, p < 0.001, 95% CI 0.24, 0.71). Partners' general QOL decreased significantly from pre-dialysis to 6 weeks (β = - 0.24, p = 0.04, 95% CI -0.47, - 0.01) but returned to its original level at 12 weeks. Patients reported improvements in the physical domain between pre-dialysis and 12 weeks (β = 6.56, p < 0.004, 95% CI 2.10, 11.03). No other domains changed significantly in patients or partners. Only in patients were there significant associations between moderator variables and general QOL. High comorbidity risk level and diabetes were associated with poorer QOL at pre-dialysis whereas being female and having an arteriovenous fistula were linked with improvements in general QOL.Conclusions: Patients reported significant improvements in their general and physical QOL after starting dialysis. Partners' general QOL worsened after patients started dialysis but improved by 12 weeks. Both patients and partners may benefit from additional educational and counselling services in the lead up to, and immediately after starting dialysis, which could facilitate the transition onto dialysis and improve QOL in both.Study Registration: This study was adopted on the NIHR Clinical Research Network (UK). The details of this study are registered on the Research Registry website (www.researchregistry.com). The identifier for this study is researchregistry2574. [ABSTRACT FROM AUTHOR]

Dialysis remains the mainstay treatment for patients with end stage renal disease. In the UK, there has been a signifi cant decline in home dialysis despite its benefi ts and cost effectiveness. Patients with chronic kidney disease (CKD) are often known to other specialties who they may continue to consult when approaching dialysis. We wished to assess the knowledge of the non-renal multidisciplinary team (MDT) regarding home dialysis and establish whether further education was warranted. This was assessed using an online survey sent to specialties likely to deal with CKD patients. In total, 364 questionnaires were sent out with a 26.4% response rate. According to the survey responses, 81.5% of non-renal MDTs lack confi dence in discussing home dialysis options with patients and 74.55% feel that they need further education about home dialysis. Targeted education may increase home dialysis uptake by multimorbid CKD patients who have a consistent message delivered by all relevant healthcare teams about the benefi ts of home dialysis. [ABSTRACT FROM AUTHOR]

Introduction: These analyses examine a) survival from the start of renal replacement therapy (RRT), based on the total incident UK RRT population reported to the UK Renal Registry, including the 18% who started on PD and the 7% who received a pre-emptive transplant and b) survival of prevalent patients. Changes in survival between 1997 and 2009 are also reported. Methods: Survival of incident patients (starting RRT during 2009) was calculated both from the start of RRT and from 90 days after starting RRT, both with and without censoring at transplantation. Survival of prevalent dialysis patients was calculated to exclude patients once they were transplanted. Both Kaplan-Meier and Cox adjusted models were used to calculate survival. Causes of death were analysed for both groups. Relative risk of death was calculated compared with the general UK population. Results: The 2009 unadjusted 1 year after 90 day survival for patients starting RRT was 86.6% (87.3% in 2008). In incident patients aged 18-64, the unadjusted 1 year survival had increased from 86.0% in 1997 to 91.3% in 2009. In incident patients aged 565, unadjusted 1 year survival had improved from 64.1% to 76.2%. There were no survival differences between genders. The relative risk of death compared to the general population decreased from 25 times at age 30-34 to 2.7 times at age 85þ. Cause of death data completeness has improved 18% since last year. Cardiac disease is the most common cause of death in prevalent dialysis patients and malignancy most frequent in prevalent transplant patients. Conclusions: Survival of patients starting RRT has improved for all ages since 1997. The frequency of cardiac disease as the cause of death has decreased since 1997. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Introduction: This chapter describes the characteristics of adult patients starting renal replacement therapy (RRT) in the UK in 2010 and the incidence rates for RRT in Primary Care Trusts and Health Boards (PCT/HBs) in the UK. Methods: The basic demographics and clinical characteristics are reported on patients starting RRT from all UK renal centres. Presentation time, defined as time between first being seen by a nephrologist and start of RRT, was also studied. Age and gender standardised ratios for incidence rates in PCT/HBs were also calculated. Results: In 2010, the incidence rates in the UK and England were similar to 2009 at 107 per million population (pmp). The incidence rate fell in Scotland (from 104 pmp to 95 pmp), increased in Northern Ireland (from 88 pmp to 101 pmp) and Wales (from 120 pmp to 128 pmp). There were wide variations between PCT/HBs in standardised incidence ratios. The median age of all incident patients was 64.9 years (IQR 51.0, 75.2). For transplant centres this was 63.1 years (IQR 49.7, 74.2) and for non-transplanting centres 66.5 years (IQR 52.9, 76.0). The median age for non-Whites was 57.1 years. Diabetic renal disease remained the single most common cause of renal failure (24%). By 90 days, 68.3% of patients were on haemodialysis, 18.1% on peritoneal dialysis, 7.7% had had a transplant and 5.9% had died or stopped treatment. The mean eGFR at the start of RRT was 8.7 ml/ min/1.73 m2 which was similar to the previous three years. Late presentation (<90 days) fell from 28.2% in 2005 to 20.6% in 2010. There was no relationship between social deprivation and presentation pattern. Conclusions: Incidence rates have plateaued in England over the last five years. They have fallen in Scotland and fallen and then risen again in Northern Ireland and Wales. Wales continued to have the highest incidence rate of the countries making up the UK. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Introduction: This chapter describes the characteristics of adult patients on renal replacement therapy (RRT) in the UK in 2010. Methods: Data were electronically collected from all 72 renal centres within the UK. Cross-sectional and longitudinal analyses were performed to describe the demographics of prevalent RRT patients in 2010 at centre and national level. Age and gender standardised ratios for prevalence rates per million population per year were calculated. Results: There were 50,965 adult patients receiving RRT in the UK on 31st December 2010. The UK prevalence of RRT (including paediatric patients) was 832 pmp. This represented an annual increase in prevalent numbers of approximately 4% although there was significant variation between centres and regions. From 2009 to 2010 there was a 1.5% increase in the number of patients on haemodialysis (HD), a 3.2% fall in peritoneal dialysis (PD) patients and a 5.4% increase in patients with a functioning transplant. The number of patients receiving home HD has increased 23% since 2009. Median RRT vintage was 5.6 years. The median age was 57.9 years (HD 66.3 years, PD 61.7 years and transplant 51.2 years) compared to 55 years in 2000. Prevalence rates in males exceeded those in females. The most common identifiable renal diagnosis was biopsyproven glomerulonephritis (16.0%), followed by diabetes (14.9%). Transplantation was the most common treatment modality (48%), HD in 44% and PD 8%. 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 4 years older than 10 years ago. This has implications for service planning and ensuring equity of care for RRT patients. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

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. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: The UK Renal Association (RA) and National Institute for Health and Clinical Excellence (NICE) have published clinical practice guidelines which include recommendations for management of anaemia in established renal failure. Aim: To determine the extent to which the guidelines for anaemia management are met in the UK. Methods: Quarterly data were obtained regarding haemoglobin (Hb) and factors that influence Hb from renal centres in England, Wales, Northern Ireland (EWNI) and the Scottish Renal Registry for the incident and prevalent renal replacement therapy (RRT) cohorts for 2010. Results: In the UK, in 2010 53.6% of patients commenced dialysis therapy with Hb &ges;10.0 g/dl (median Hb 10.1 g/dl). The median Hb of haemodialysis (HD) patients was 11.5 g/dl with an interquartile range (IQR) of 10.5-12.3 g/dl. Of HD patients 84.6% had Hb &ges;10.0 g/dl. The median Hb of peritoneal dialysis (PD) patients in the UK was 11.6 g/dl (IQR 10.6-12.5 g/dl). Of UK PD patients, 87.2% had Hb &ges;10.0 g/dl. The median ferritin in HD patients in EWNI was 444 μg/L (IQR 299-635) and 96% of HD patients had a ferritin &ges;100 μg/L. The median ferritin in PD patients was 264 μg/L (IQR 148-426) with 86% of PD patients having a ferritin &ges;100 μg/L. In EWNI the mean Erythropoietin Stimulating Agent (ESA) dose was higher for HD than PD patients (9,020 vs. 6,202 IU/week). Conclusions: Of prevalent HD patients, 52.7% had Hb &ges;10 and ≤12 g/dl. Of prevalent PD patients, 54.3% had Hb 10.5-12.5 g/dl. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Introduction: This chapter describes the characteristics of adult patients starting renal replacement therapy (RRT) in the UK in 2008 and the acceptance rates for RRT in Primary Care Trusts and Local Authorities (PCT/LAs) in the UK. Methods: The basic demographics and clinical characteristics are reported on patients starting RRT from all UK renal centres. Late referral, defined as time between first being seen by a nephrologist and start of RRT being <90 days was also studied. Age and gender standardised ratios for acceptance rate in PCT/LAs were calculated. Results: In 2008, the acceptance rate in the UK was 108 per million population (pmp). Acceptance rates in Scotland (103 pmp), Northern Ireland (97 pmp) and Wales (117 pmp) have all fallen although Wales still remains the country with the highest acceptance rate. There were wide variations between PCT/LAs with respect to the standardised ratios, which were lower in more PCT/LAs in the North West and South East of England and higher in London, the West Midlands, Scotland, Northern Ireland, and Wales. The median age of all incident patients was 64.1 years and for non-Whites 56.1 years. Diabetic renal disease remains the single most common cause of renal failure (24%). By 90 days, 67.7% of patients were on haemodialysis, 19.8% on peritoneal dialysis, 5.9% had had a transplant and 6.6% had died or had stopped treatment. By 90 days, 77.4% of all dialysis patients were on HD. The geometric mean eGFR at the start of RRT was 8.6 ml/min/ 1.73 m2 which was similar to the eGFR of those starting in 2007. The incidence of late presentation (<90 days) has fallen from 28% in 2003 to 22% in 2008. There was no relationship between social deprivation and referral pattern. Conclusions: Acceptance rates have fallen in Northern Ireland, Scotland and Wales whilst they have plateaued in England over the last three years. Wales continued to have the highest acceptance rate of the countries making up the UK. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Introduction: These analyses examine survival from the start of renal replacement therapy (RRT), based on the total incident UK RRT population reported to the UK Renal Registry, including the 19% who started on PD and the 5% who received a pre-emptive transplant. Survival of prevalent patients and changes in survival between 1997 and 2007 are also reported. Methods: Survival was calculated for both incident and prevalent patients on RRT and compared between the UK countries after adjustment for age. Survival of incident patients (starting RRT during 2007) was calculated both from the start of RRT and amongst the cohort who survived at least 90 days after RRT, and both with and without censoring at transplantation. Both the Kaplan–Meier and Cox adjusted models were used to calculate survival. Causes of death were analysed for both groups. Relative risk of death was calculated compared with the general UK population. Results: The 2007 unadjusted 1 year after 90 day survival for patients starting RRT was 86.2%. In incident 18–64 year olds the unadjusted 1 year survival had risen from 85.9% in 1997 to 92.4% in 2007 and for those aged >65 it had risen from 63.8% to 74.9%. The age-adjusted survival (adjusted to age 60) of prevalent dialysis patients rose from 85% in 2000 to 89% in 2007. Diabetic prevalent patient survival rose from 76.5% in 2000 to 83.0% in 2007. The age-standardised mortality ratio for prevalent RRT patients compared with the general population was 28.6 at age 30 years (and was lower than in the 1998–2001 cohort in all age groups up to 45–49) and 4.6 at age 80 years. In the prevalent RRT dialysis population, cardiovascular disease accounted for 29% of deaths, infection 17% and treatment withdrawal 14%. Of deaths, 26% were recorded as uncertain. Treatment withdrawal was a more frequent cause of death in patients aged >65 at start than in younger patients. The median life years remaining for a 25–29 year old on RRT was 20 years and 5 years for a 70 year old. Conclusions: Incident 2007 and prevalent 2008 patient survival on RRT in all the UK countries for all age ranges and also for patients with diabetes continued to improve. The relative risk of death on RRT compared with the general population has fallen since 2001. Death rates on dialysis in the UK remained lower than when compared with a similar aged population on dialysis in the USA. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Introduction: This chapter describes the characteristics of adult patients on renal replacement therapy (RRT) in the UK in 2008 and the prevalence rate per million population (pmp) in Primary Care Trusts and local authorities (Council Areas or District Councils) (PCT/LAs) were calculated. Methods: Complete data were electronically collected from all 72 renal centres within the UK. A series of cross-sectional and longitudinal analyses were performed to describe the demographics of prevalent RRT patients in 2008 at centre and national level in the UK. Age and gender standardised ratios of actual to expected for prevalence rates in PCT/LAs were calculated. Results: There were 47,525 adult patients receiving RRT in the UK on 31/12/2008, equating to a UK prevalence of 774 pmp. This represents an annual increase in prevalence of approximately 4.4% although there was significant variation between PCT/LA areas. The pmp growth rate from 2007 to 2008 for prevalent patients by treatment modality in the UK was 5.9% for haemodialysis (HD), a fall of 9.2% for peritoneal dialysis (PD) and growth of 4.6% with a functioning transplant. Over the long term (1982–2007), the steady growth in transplant prevalent numbers was maintained at 4%. There was a slow but steady decline in PD patient numbers from 1999 onwards. Median RRT vintage was 5.3 years. The median age of prevalent patients was 57.3 years (HD 65.5 years, PD 61.0 years and transplant 50.4 years). For all ages, prevalence rates in males exceeded those in females peaking in the 75–79 years age group at 2,582 pmp for males and 70–74 years age group at 1,408 pmp for females. The most common identifiable renal diagnosis was biopsy-proven glomerulonephritis (16.0%), followed by diabetes (14.1%). Transplantation was the most common treatment modality (47%) followed closely by HD (43%). However, HD was increasingly common with increasing older age at the expense of transplantation. Conclusions: The HD and transplant population continued to expand whilst the PD population contracted. There was national, regional and dialysis centre level variation in prevalence rates. This has implications for service planning and ensuring equity of care for RRT patients. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: The UK Renal Association (RA) and National Institute for Health and Clinical Excellence (NICE) have published Clinical Practice Guidelines which include recommendations for management of anaemia in established renal failure. Aims: To determine the extent to which the guidelines for anaemia management are met in the UK. Methods: Quarterly data (haemoglobin (Hb) and factors that influence Hb) extracts from renal centres in England, Wales, Northern Ireland (EWNI), and annual data from the Scottish Renal Registry for incident and prevalent renal replacement therapy (RRT) cohorts for 2008 were analysed by the UK Renal Registry (UKRR). Results: In the UK, in 2008 57% of patients commenced dialysis therapy with Hb ≥ 10.0 g/dl (median Hb 10.2 g/dl). For incident patients the Hb at 3 and 6 months of dialysis treatment was 11.4 and 11.7 g/dl respectively. The median Hb of haemodialysis (HD) patients was 11.6 g/dl with an interquartile range (IQR) of 10.6–12.5 g/dl. Of HD patients 85% had a Hb ≥ 10.0 g/dl. The median Hb of peritoneal dialysis (PD) patients in the UK was 11.7 g/dl (IQR 10.8–12.6 g/dl). Of UK PD patients 89% had a Hb ≥ 10.0 g/dl. The median ferritin in HD patients in EWNI was 436 mg/L (IQR 289–622) and 95% of HD patients had a ferritin ≥ 100 mg/L. The median ferritin in PD patients was 246 mg/L (IQR 141–399) with 84% of PD patients having a ferritin ≥ 100 mg/L. In EWNI the mean ESA dose was higher for HD than PD patients (9,166 vs. 6,302 IU/week). Conclusions: Last year for the flrst time a small fall (from 85.9% in 2006 to 85.6% in 2007) in the % of HD patients with a Hb of ≥ 10 g/dl which was thought to be related to the implementation of the new Hb Standard which has a target range of 10.5–12.5 g/dl was seen. This year attainment of Hb ≥ 10 g/dl in HD patients fell again slightly to 85.3%. In HD patients, 54% of patients had a Hb ≥ 10.5 and ≤ 12.5 g/dl compared with 53% in the 2008 Report. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: A preliminary review of the UK Renal Registry (UKRR) pre-RRT study data revealed results suggesting that, for some patients, the date of start of renal replacement therapy (RRT), as reported to the UKRR, was incorrect and often significantly later than the true date of start. A more detailed study then aimed to validate a set of criteria to identify patients with an incorrect start date. Methods: Pre-RRT laboratory data were electronically extracted from 8,810 incident RRT patients from 9 UK renal centres. Any patient with a low urea (<15 mmol/L) at the start of RRT or with a substantial improvement in kidney function (either a fall in urea >10 mmol/L or rise in eGFR >2 ml/ min/1.73 m) within the two months prior to RRT were considered to potentially have an incorrect date of start. In 4 selected centres, the electronic patient records of all patients fl‚agged were reviewed to validate these criteria. Results: Of 8,810 patients, 1,616 (18.3%) were fl‚agged by the identification criteria as having a potentially incorrect date of start of RRT, although a single centre accounted for 41% of the total flagged cohort. Of these flagged patients, 61.7% had been assigned an incorrect date of start of haemodialysis (HD), 5.7% had evidence of acute RRT being given before the reported date of start of HD and 9.2% had evidence of starting peritoneal dialysis exchanges prior to the reported date of start. Of those flagged, 10.7% had a correct date of start of RRT. Conclusions: Accurate reporting of RRT episodes is vital for the analysis of time dependent studies such as survival or time to transplantation. A proportion of patients starting RRT were assigned an incorrect start date. In order to improve the accuracy of this reporting the UK Renal Registry must work with renal centres and clinical staff on improving data input for the start of RRT. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Aims: To describe the demographics of the paediatric RRT population in the UK and analyse changes in demographics with time. Methods: Extraction and analysis of data from the UK Paediatric Renal Registry and the UK Renal Registry (UKRR). Results: The UK paediatric established renal failure (ERF) population in December 2008 was 905 patients. The prevalence under the age of 16 years was 56 per million age related population (pmarp) and the incidence 7.4 pmarp. The incidence and prevalence for South Asian patients was much higher than that of the White and Black populations. Renal dysplasia was the most common cause of ERF accounting for 33% of prevalent cases. Diseases with autosomal recessive inheritance were a common cause of ERF in all ethnic groups, 23.5% of prevalent and 18% of incident cases. Whilst the incidence and prevalence of diseases with autosomal recessive inheritance in the South Asian population was 3 times that of the white population, this was not the sole reason for the increased proportion of South Asian patients with ERF, as diseases with no defined inheritance were twice as common in this ethnic group than in White patients. Prevalent mortality stood at 9.4%. Most deaths were in patients presenting with ERF early in life and mortality varied markedly according to the aetiology of ERF. The proportion with new grafts from living donors has steadily risen to 54%. Children from ethnic minority groups were less likely to have an allograft and living donation was less frequent in this population. For those on dialysis, 56% were receiving peritoneal dialysis. This was the main treatment modality for patients under 4 years of age. Conclusions: The paediatric ERF population continued to expand slowly. Incidence and prevalence rates were stable and similar to other developed nations. The high incidence in patients from ethnic minority groups will lead to a greater proportion of the population being from these groups in time. To maintain the high proportion of engrafted patients it will be necessary to encourage living donation in the ethnic minority population. Case note analysis of the factors involved in mortality would be valuable. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Background: International comparisons between renal registries are important to highlight epidemiological and practice differences in RRT provision between countries. This report aims to compare the rates of RRT incidence and prevalence in the UK with a number of different countries. Methods: Data from 19 countries or regions between 2003 and 2007 from four international renal registries were analysed. Rates of RRT incidence, prevalence, transplantation and dialysis modality were compared. A crude mortality rate for each country was calculated. Results: Despite continued growth, the UK ranked 16th highest in incidence rate and 15th in prevalence rate in 2007. This may partly be related to successful primary care preventing stage 5 CKD. The UK had the 8th fastest rate of increase in RRT prevalence of 18 countries (4.2%/ year). The age profile of UK RRT patients was comparable with other countries. The UK had the 6th highest use of home dialysis therapies. The UK has the 8th highest incidence and 9th highest prevalence rate of kidney transplantation of 16 countries. Conclusion: Meeting the growing demand for RRT is a problem for all countries that choose to offer it. The UK continues to provide for growth in demand for RRT. Copyright © 2010 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

End stage renal disease (ESRD) is associated with a high mortality rate among patients hospitalized with COVID-19. To the best of our knowledge, there is limited data on the clinical features, ethnicity, inpatient glycaemic control and outcomes in patients with diabetes related ESRD in the literature. We report the clinical features and outcomes of 39 consecutive ESRD patients (28 on haemodialysis [HD] and 11 with renal transplant) secondary to diabetic kidney disease admitted to a university hospital with COVID-19. We observed a high prevalence of patients of Afro-Caribbean ethnicity hospitalized with COVID-19 with a 73% and 54% prevalence in renal transplant and HD groups respectively. The mortality rate of our cohort was 36%. Nearly a one-third of HD patients and one-fifth of transplant patients had hypoglycaemic events during COVID-19 hospitalization. Adjustment of diabetes treatment was frequently required. Our data highlight the importance of integrated multidisciplinary care of patients with diabetes related ESRD hospitalized with COVID-19., (© 2020 Asian Pacific Society of Nephrology.)

Objectives: To assess the prevalence of mild-to-moderate distress in patients with end-stage renal disease (ESRD) and determine the association between distress and patient characteristics., Design: Cross-sectional survey using emotion thermometer and distress thermometer problem list., Setting: Renal units in four hospital Trusts in the West Midlands, UK., Participants: Adult patients with stage 5 chronic kidney disease who were: (1) On prerenal replacement therapy. (2) On dialysis for less than 2 years. (3) On dialysis for 2 years or more (4) With a functioning transplant., Outcomes: The prevalence of mild-to-moderate distress, and the incidence of distress thermometer problems and patient support needs., Results: In total, 1040/3730 surveys were returned (27.9%). A third of survey respondents met the criteria for mild-to-moderate distress (n=346; 33.3%). Prevalence was highest in patients on dialysis for 2 years or more (n=109/300; 36.3%) and lowest in transplant patients (n=118/404; 29.2%). Prevalence was significantly higher in younger versus older patients (χ 2 =14.33; p=0.0008), in women versus men (χ 2 =6.63; p=0.01) and in black and minority ethnic patients versus patients of white ethnicity (χ 2 =10.36; p=0.013). Over 40% of patients (n=141) reported needing support. More than 95% of patients reported physical problems and 91.9% reported at least one emotional problem., Conclusions: Mild-to-moderate distress is common in patients with ESRD, and there may be substantial unmet support needs. Regular screening could help identify patients whose distress may otherwise remain undetected. Further research into differences in distress prevalence over time and at specific transitional points across the renal disease pathway is needed, as is work to determine how best to support patients requiring help., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY. Published by BMJ.)

Introduction: This chapter describes the demographics of UK RRT patients in 2007. Methods: Complete data were electronically collected from 71 UK centres with the remaining 1 centre submitting summary data. A series of crosssectional and longitudinal analyses were performed to describe the demographics of prevalent UK RRT patients in 2007 at a centre and a national level. Results: There were 45,484 adult patients receiving RRT on 31/12/2007. The population prevalence for adults was 746 per million population per year (pmp) with an annual increase in prevalence of approximately 5% per annum. There was substantial variation in standardised prevalence ratios between Primary Care Trust (PCT)/Health Authority (HA) areas which were associated with geographical factors and differences in ethnicity with mean standardised prevalence ratios (SPR) significantly higher in PCTs/HAs with a high proportion of ethnic minorities. The median age of prevalent RRT patients was 57 years (HD 65 years, PD 60 years, transplant 50 years). Median RRT vintage was 5.3 years (HD 2.8 years, PD 2.1 years, transplant 10.4 years). For all ages, crude prevalence rates in males exceeded those in females, peaking in the 75–79 year age band for males at 2,506 pmp and in females in the 70–74 year age band at 1,314 pmp. The most common identifiable diagnosis was glomerulonephritis (15.3%) but in those over 65 it was diabetes (15.1%). The most common treatment modality was transplantation (46.6%), closely followed by centrebased HD (42.1%) in either the primary centre (25.2%) or the satellite unit (16.9%). The HD population has continued to expand, and the PD population to contract. HD was increasingly prominent with increasing age at the expense of transplantation. Conclusions: There were national, area and dialysis centre level variation in the prevalent UK RRT population. This has implications for service planning and ensuring equity of care for RRT patients. Copyright © 2009 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

In 2005, the incidence of renal replacement therapy (RRT) in the United Kingdom was 110 per million of the population (pmp) using the day 0 definition and 103 pmp using the day 90 definition.Relative to the 42 countries reporting data to the USRDS, the day 0 and day 90 rates for RRT incidence in the UK are the 32nd and 35th lowest, respectively. However, the overall incidence for the UK masks higher rates in Scotland, Wales and Northern Ireland (123, 129 and 140 pmp, respectively).Of the six countries with RRT incidence rates comparable with those in the UK (Australia, Finland, Malaysia, New Zealand, Norway and the Netherlands) three had relatively high rates for the age band 20–44, and two had relatively high rates for the age band 45–60.The proportion of incident patients with diabetes as the cause of established renal failure also varied considerably among these six comparator countries from 16% to 40% but rates of peritoneal dialysis utilization were comparable with that in the UK and generally higher than in countries with higher rates of RRT incidence.When transplantation rates were considered alongside prevalence rates for RRT, the UK position appeared relatively high at 46% (11th out of 37 countries), although still considerably lower than in Norway and the Netherlands (72 and 54%, respectively).Although variation in RRT incidence rate exists within the four countries of the UK, the overall RRT incidence, reported for the first time this year, appears similar to that observed in a number of demographically similar countries around the world.Examining the UK alongside the six comparator countries, different patterns of RRT incidence were observed across the age bands and variation in the RRT incidence secondary to diabetes mellitus raised interesting questions.The higher rates of renal transplantation achieved in several of the comparator countries also justifies further analysis. [ABSTRACT FROM AUTHOR]

This analysis presents the survival of patients starting renal replacement therapy (RRT) in UK renal units (‘centres’), and includes an analysis of survival by centre. Data from 59 of the 70 UK centres are included. This is the first year that UK centre anonymity has been removed from analysis of patient survival by centre. Survival after adjustment for comorbidity is also reported for the first time although this analysis is restricted to those centres returning data on comorbidity in at least 85% of incident patients.The importance of adjusting for comorbidity can be seen in that for one centre, after adjustment of survival for age and diagnosis, the adjusted 1 year after 90 day survival was 84.6%. After adjusting to the average comorbidity present across centres, survival increased to 90.4%. Improved comorbidity data returns by renal units may require investment in informatics staff and creating structural process at renal unit level for clinicians to support these data returns.From the date of first RRT, the 1 year survival of all patients (unadjusted for age) is 79%. From the 90th day of RRT (to allow comparison with other countries’ 1 year survival), the 1 year survival is 83%. The age adjusted (60 years) survival for the 1 year after 90 day period is 86%. There is a high death rate in the first 90 days on RRT (6% of all patients starting RRT), a period not included in reports by many registries and other studies.The 5 year survival (including deaths within the first 90 days) rates are 58, 53, 44, 28, 19 and 12%, respectively for patients aged 18–34, 35–44, 45–54, 55–64, 65–74 and >75 years.The ‘vintage effect’ of increasing hazard of death with length of time on RRT, prominent in data from the US, is only noted in older age groups (65–75 and 75+ years) at 5–6 years after starting RRT.Six centres had a figure for the 1 year after 90 day survival which was outside 2 SDs from the mean for the UK: in three cases this was better survival, and in three, poorer survival, than expected. Poor reporting by renal units of patient comorbidity makes interpretation of these apparent differences in patient survival between centres difficult and a relationship to clinical performance cannot yet be inferred. [ABSTRACT FROM AUTHOR]

In the 2006 Vascular Access Survey, 51% of all patients commenced renal replacement therapy (RRT) using definitive access. Of patients commencing on haemodialysis HD, 37% commenced with definitive access (31% in the 2005 survey).Of those known to the renal units for a year or more, only half started HD with definitive access. Around 4% of patients currently receiving HD were in-patients. Around 30% of staphylococcal line infections were methicillin resistant Staphylococcus aureus (MRSA), which was similar to the 2005 survey.At 6 months after starting RRT, 76% of live patients were using definitive access [defined as the use of peritoneal dialysis (PD), transplant, arteriovenous fistula (AVF) or arteriovenous graft (AVG)] and at 12 months it was 80%.Of the HD patients starting RRT in April 2005, 65% started using venous catheters, at 6 months this had fallen to 35% and at 12 months to 30%. The use of non-tunnelled lines was <1% by 6 months.The proportion on PD had fallen slightly at 12 months (from 20% to 16%) by which time 11% had received a transplant, 1% had recovered and 18% had died.Data returns for the 2006 survey were returned from 37/74 renal units compared with returns from 62 units in the 2005 survey. [ABSTRACT FROM AUTHOR]

The total number of patients active on the transplant waiting list (adult and paediatric) on 31 December 2005 was 5736, an 8% increase from the previous year. On 31 December 2005, 45.7% of prevalent adult RRT patients in the UK, had a functioning renal transplant which equated to 19 074 patients. During 2005, the death rate in prevalent transplant patients was 2.7 per 100 patient years. An additional 3.1% of all prevalent transplants failed with patients returning to dialysis.During 2005, deceased heart beating donor numbers decreased by 18% compared to 2004. In comparison, non-heart beating donors and living kidney donors increased by 35% and 17%, respectively, in 2005. The proportion of renal transplants performed from deceased heart beating donors fell from 68% in 2004 to 60% in 2005. There is wide variation in prevalence per million population (pmp) of transplanted patients resident in each local authority area across the United Kingdom. Total 11.4% of incident transplants in 2005 were due to patients with diabetes. The median eGFR was 46.1 ml/min/1.73 m2, with 18% of prevalent transplant recipients having an eGFR <30 ml/min/1.73 m2. The median Hb in prevalent transplant recipients was 12.9 g/dl, with 10% of patients having an Hb <10 g/dl. The median systolic and diastolic BP was 136 and 79 mmHg, respectively, with only 25% of patients within guidelines.Transplant function analysed by CKD stages 1–2 (eGFR < 60), 3 (eGFR 30–59), 4 (eGFR 15–29) and 5 (eGFR < 15), shows that these categories account for 24%, 59%, 15% and 2.5% of patients, respectively. Haemoglobin values fall with decreasing eGFR such that of the 2.5% of transplant patients with eGFR <15 ml/min, 27% had an Hb <10 g/dl and 51% <11 g/dl. Control of iPTH was poor in transplant recipients in CKD stages 4 and 5, with 22% and 50% of patients, respectively, having a PTH > 32 pmol/l (=300 ng/l). Patients with failing transplants are less likely to achieve RA targets of key biochemical variables when compared to patients on dialysis. There is still wide variability in the completeness of data returns from individual units. [ABSTRACT FROM AUTHOR]

Forty-one percent of UK patients commence RRT with an Hb <10.0 g/dl. The mean Hb at commencement of RRT is 10.3 g/dl. Eighty-five percent of patients on dialysis in the UK have an Hb ≥ 10.0 g/dl by 6 months after commencement of RRT.The median Hb on haemodialysis in the UK is 11.8 g/dl with an IQR of 10.7–12.8 g/dl. Eighty-six percent of haemodialysis patients in the UK have a Hb ≥ 10.0 g/dl. The median Hb on peritoneal dialysis in the UK is 12.0 g/dl with an IQR of 11.0–12.9 g/dl. Ninety percent of peritoneal dialysis patients in the UK have an Hb ≥ 10.0 g/dl.In the UK, 49% of patients on PD and 48% of patients on haemodialysis have an Hb between 10.5–12.5 g/dl.The median ferritin in UK haemodialysis patients is 413 μg/l (IQR 262–623), 95% of UK haemodialysis patients have a ferritin ≥100 μg/l.The median ferritin in UK PD patients is 256 μg/l (IQR 147–421), 86% of UK peritoneal dialysis patients have a ferritin ≥ 100 μg/l.A higher proportion of HD patients than PD patients receive ESA therapy (88% vs 76%). The ESA dose is higher for HD than PD patients (9204 vs 6080 IU/week). [ABSTRACT FROM AUTHOR]

The incidence and prevalence of ERF in children in the UK are relatively static at 8.0 and 47.7 per million population under the age of 15 years, respectively.The prevalence of ERF in children from the South Asian community is almost three times that of the White population whilst the incidence is over three times that of the White population and similar to the increase seen in the adult population. The high incidence and prevalence are related to the high incidence of inherited diseases which cause ERF in the South Asian community.ERF in children is more common in males than females (male to female ratio 1.54:1). This is due to a preponderance of males with renal dysplasia and obstructive uropathy causing ERF. For the South Asian patients, the gender ratio is 1:1 as the inherited diseases are mainly autosomal recessive.Renal dysplasia is the single most common cause of ERF in childhood, followed closely by glomerular disorders and then obstructive uropathy.The majority of prevalent paediatric ERF patients (76%) have a renal allograft. Of these, 28% are from living donations.The proportion of patients from ethnic minority groups with a functioning allograft is significantly smaller than that in the White population (P < 0.0001). Despite this, the rate of living related donation is no higher in the ethnic minority population.In prevalent patients PD is twice as commonly used as HD with the majority managed with automated PD. For patients at one year from starting RRT, 49% are on PD, 10% on HD and 41% have a transplant. [ABSTRACT FROM AUTHOR]

Many renal units still fail to return blood pressure data to the Renal Registry. In England, Northern Ireland and Wales, the percentage of HD patients achieving the combined blood pressure standard (<140/90 pre-dialysis) averages 43% (inter unit range 16–60%) and post-dialysis (<130/80) average 48% (range 22–66%). On average 27% (range 12–48%) of PD patients achieve the standard of <130/80 and 26% of renal transplant patients (range 16–40%).Over the last 8 years there has been no significant change in systolic or diastolic blood pressure achievement.Better comorbidity data returns are required by the Registry to perform blood pressure survival analyses. [ABSTRACT FROM AUTHOR]

Summary data are provided for the whole United Kingdom. There were 41 776 adult patients alive on renal replacement therapy (RRT) in the UK at the end of 2005, a prevalence for adults of 694 pmp. Addition of 748 children under the age of 18 on RRT gives a total prevalence of 706 pmp. The more detailed analysis includes data on 37 534 patients from 65 of the 70 units which returned detailed data to the Registry: all in Northern Ireland, Scotland and Wales, and 45 of the 50 units in England. The annual increase in prevalence in the 38 renal units participating in the Registry since 2000 was 5.0%. There is substantial variation in the crude Local Authority area prevalence from 299 pmp to 1275 pmp.In general, areas with large ethnic minority populations had high standardized prevalence ratios (SPR). Nevertheless several Local Authority areas in South Wales (Methyr Tydfil, Swansea and Rhondda/Cynon/Taff) had a higher SPR than would be predicted from the local ethnic mix. Another group in North West England (Bury, Rochdale, Oldham and Salford), had a lower SPR than expected from the local ethnic mix. The median age of prevalent patients on RRT was 56.6 years, that of patients on HD 64.5 years, PD 59.2 years and transplanted patients 49.7 years. The median vintage of the whole RRT population was 5.1 years: that of transplanted patients was 9.8 years, HD patients 2.8 years and PD patients 2.1 years. The maximal prevalence rate (SPR) occurred in men (2270 pmp) in the 75–79-year age band and women (1144 pmp) in the 65–74-year age band.Of RRT patients in the UK, 45% had a transplant, 41.7% were on centre-based haemodialysis and 12% on peritoneal dialysis. The proportion of patients on home haemodialysis remained very small (1.2%) in spite of the recent NICE guidelines. The haemodialysis population is continuing to expand, mainly through growth in the proportion of patients undergoing dialysis in satellite units. The peritoneal dialysis population is continuing to contract in spite of the small but progressive rise in automated PD.The most common identifiable diagnosis in those under 65 was glomerulonephritis (18.0%) and in those over 65 it was diabetes (13.4%).One-year survival rates of prevalent patients in the different centres contributing to the UK Renal Registry are presented. The centres agreed to remove anonymity. There is no evidence of any significant differences in survival of prevalent patients between UK centres.The one-year survival of prevalent dialysis patients increased significantly from 1998 to 2004 in England (83.3% to 87.1% P = 0.0001 for linear trend), Scotland (84.0% to 87.0% P = 0.023 for linear trend) and Wales (83.4% to 86.1% P = 0.027 for linear trend). The test for non-linearity in this trend (indicating that there has been a large increase which is now tailing off) was significant for England and Wales. [ABSTRACT FROM AUTHOR]

The UK Renal Registry is part of the UK Renal Association and provides independent audit and analysis of renal replacement therapy in the UK. The Registry is funded directly by participating renal units through an annual fee per patient registered.The Registry is now collecting data on incidence and prevalence from 100% of UK renal units, with the five remaining non-linked sites in England providing summary data.Maintaining and enhancing Registry functionality will be an important touchstone for the Connecting for Health initiative. Collaboration with other formal agencies also promises an exciting prospect for future development. After a long proving period, the means, methods and roles have come together to complete an effective adjunct to clinical activity, planning, research and the performance of the renal community. [ABSTRACT FROM AUTHOR]

Comorbidity returns have continued to improve, albeit slowly, with centres running Mediqal software having the highest rates of completeness.Diabetes as a primary renal diagnosis accounted for 20% of those starting RRT, but a further 7% had diabetes present as a comorbid condition. The incidence of smoking remained high at 17% of diabetic patients, which was similar to that found in non-diabetics.Twelve percent of the patients starting RRT had a previous myocardial infarction (MI) and 31% of those aged over 65 years starting RRT had ischaemic heart disease (IHD).Patients starting on peritoneal dialysis (PD) were on average 9 years younger than those on haemodialysis (HD) and had fewer comorbidities present.Patients starting RRT without any comorbidity present had a lower median estimated glomerular filtration rate (eGFR) than those with comorbid conditions.Patients with a previous MI or coronary artery bypass grafting (CABG), started RRT with slightly higher mean haemoglobin than those without comorbid conditions or other comorbid conditions.On univariate survival analysis, diabetes was not associated with an increased risk of death amongst patients aged over 65 years, possibly due to its close association with other comorbidities in this age group.In the multivariate survival analysis, the presence of ischaemic/neuropathic ulcers was the predictor of worst survival, followed by malignancy, previous MI and age per 10 year increment.Smoking was less common in both South Asian and black patients than whites (7 vs 17%) starting RRT. Twenty-three percent of both South Asian and white patients started RRT with IHD compared with only 12% of Black patients. [ABSTRACT FROM AUTHOR]