Publications by authors named "Kitty J Jager"

319 Publications

Organ donation and transplantation: a multi-stakeholder call to action.

Nat Rev Nephrol 2021 May 5. Epub 2021 May 5.

Edinburgh Transplant Centre, Royal Infirmary of Edinburgh & University of Edinburgh, Edinburgh, UK.

Although overall donation and transplantation activity is higher in Europe than on other continents, differences between European countries in almost every aspect of transplantation activity (for example, in the number of transplantations, the number of people with a functioning graft, in rates of living versus deceased donation, and in the use of expanded criteria donors) suggest that there is ample room for improvement. Herein we review the policy and clinical measures that should be considered to increase access to transplantation and improve post-transplantation outcomes. This Roadmap, generated by a group of major European stakeholders collaborating within a Thematic Network, presents an outline of the challenges to increasing transplantation rates and proposes 12 key areas along with specific measures that should be considered to promote transplantation. This framework can be adopted by countries and institutions that are interested in advancing transplantation, both within and outside the European Union. Within this framework, a priority ranking of initiatives is suggested that could serve as the basis for a new European Union Action Plan on Organ Donation and Transplantation.
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http://dx.doi.org/10.1038/s41581-021-00425-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8097678PMC
May 2021

Patient-Reported Measures and Lifestyle Are Associated With Deterioration in Nutritional Status in CKD Stage 4-5: The EQUAL Cohort Study.

J Ren Nutr 2021 Apr 27. Epub 2021 Apr 27.

Renal unit, Department of clinical intervention and technology (CLINTEC), Karolinska Institutet, Stockholm, Sweden.

Objective: The aim of this study was to explore the changes in nutritional status before dialysis initiation and to identify modifiable risk factors of nutritional status decline in older adults with advanced renal disease.

Design And Methods: The European Quality Study on treatment in advanced chronic kidney disease (EQUAL) is a prospective, observational cohort study involving six European countries. We included 1,103 adults >65 years with incident estimated glomerular filtration rate <20 mL/min/1.73 m not on dialysis, attending nephrology care. Nutritional status was assessed with the 7-point Subjective Global Assessment tool (7-p SGA), patient-reported outcomes with RAND-36 and the Dialysis Symptom Index. Logistic regression was used to estimate the associations between potential risk factors and SGA decline.

Results: The majority of the patients had a normal nutritional status at baseline, 28% were moderately malnourished (SGA ≤5). Overall, mean SGA decreased by -0.18 points/year, (95% confidence interval -0.21; -0.14). More than one-third of the study participants (34.9%) deteriorated in nutritional status (1 point decline in SGA) and 10.9% had a severe decline in SGA (≥2 points). The proportion of patients with low SGA (≤5) increased every 6 months. Those who dropped in SGA also declined in estimated glomerular filtration rate and mental health score. Every 10 points decrease in physical function score increased the odds of decline in SGA by 23%. Lower physical function score at baseline, gastrointestinal symptoms, and smoking were risk factors for impaired nutritional status. There was an interaction between diabetes and physical function on SGA decline.

Conclusions: Nutritional status deteriorated in more than one-third of the study participants during the first year of follow-up. Lower patient-reported physical function, more gastrointestinal symptoms, and current smoking were associated with decline in nutritional status.
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http://dx.doi.org/10.1053/j.jrn.2021.03.006DOI Listing
April 2021

Temporal Trends in the Quality of Deceased Donor Kidneys and Kidney Transplant Outcomes in Europe: an analysis by the ERA-EDTA Registry.

Nephrol Dial Transplant 2021 Apr 12. Epub 2021 Apr 12.

Kitty J. Jager Professor, : ERA, -EDTA Registry, Department of Medical Informatics, Amsterdam, UMC-location, AMC, Amsterdam Public Health Research Institute, University of Amsterdam, Amsterdam, the, Netherlands.

Background: We investigated ten-year trends in deceased donor kidney quality expressed as the kidney donor risk index (KDRI) and subsequent effects on survival outcomes in a European transplant population.

Methods: Time trends in the crude and standardised KDRI between 2005-2015, by recipient age, sex, diabetic status, and country were examined in 24,177 adult kidney transplant recipients in seven European countries. We determined five-year patient and graft survival probabilities and the risk of death and graft loss by transplant cohort (cohort 1: 2005-2006, cohort 2: 2007-2008, cohort 3: 2009-2010) and KDRI quintile.

Results: The median crude KDRI increased by 1.3% annually from 1.31 (interquartile range, IQR: 1.08-1.63) in 2005 to 1.47 (IQR: 1.16-1.90) in 2015. This increase i.e., lower kidney quality, was driven predominantly by increases in donor age, hypertension and donation after circulatory death. With time, the gap between the median standardised KDRI in the youngest (18-44 years) and eldest (>65 years) recipients widened. There was no difference in the median standardised KDRI by recipient sex. The median standardised KDRI was highest in Austria, the Netherlands, and Basque Country (Spain). Within each transplant cohort, the 5-year patient and graft survival probability were higher for the lowest KDRIs. There was no difference in the patient and graft survival outcomes across transplant cohorts, however over time the survival probabilities for the highest KDRIs improved.

Conclusions: The overall quality of deceased donor kidneys transplanted between 2005-2015 has decreased and varies between age groups and countries. Overall patient and graft outcomes remain unchanged.
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http://dx.doi.org/10.1093/ndt/gfab156DOI Listing
April 2021

Pitfalls when comparing COVID-19-related outcomes across studies-lessons learnt from the ERACODA collaboration.

Clin Kidney J 2021 Mar 2;14(Suppl 1):i14-i20. Epub 2021 Feb 2.

Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.

Reported outcomes, such as incidence rates of mortality and intensive care unit admission, vary widely across epidemiological coronavirus disease 2019 (COVID-19) studies, including in the nephrology field. This variation can in part be explained by differences in patient characteristics, but also methodological aspects must be considered. In this review, we reflect on the methodological factors that contribute to the observed variation in COVID-19-related outcomes and their risk factors that are identified in the various studies. We focus on issues that arose during the design and analysis phase of the European Renal Association COVID-19 Database (ERACODA), and use examples from recently published reports on COVID-19 to illustrate these issues.
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http://dx.doi.org/10.1093/ckj/sfab027DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7929019PMC
March 2021

Kidney Transplantation in Small Children: Association Between Body Weight and Outcome - A Report From the ESPN/ERA-EDTA Registry.

Transplantation 2021 Mar 26. Epub 2021 Mar 26.

Division of Pediatric Nephrology and Gastroenterology, Medical University Vienna, Austria ESPN/ERA-EDTA Registry, Amsterdam UMC, University of Amsterdam, Department of Medical Informatics, Amsterdam Public Health research institute, Meibergdreef 9, Amsterdam, the Netherlands; Department of Pediatric Nephrology, University Medical Center Ljubljana, Slovenia; Division of Paediatric and Adolescent Medicine, Oslo University Hospital, Norway; Children's Medical Center, Landspitali-The National University Hospital of Iceland, and Faculty of Medicine, School of Health Sciences, University of Iceland, Reykjavik, Iceland; Karolinska Institutet- Karolinska University Hospital Huddinge, Stockholm, Sweden; Department of Pediatrics, Medical University Graz, Graz, Austria; Department of Pediatric Nephrology and Transplantation, New Children's Hospital, University of Helsinki and Helsinki University Hospital, Helsinki, Finland; Department of Pediatric Nephrology, Erasmus MC- Sophia Children's Hospital, Rotterdam, the Netherlands; Nephrology Unit, University Children's Hospital, Zürich, Switzerland; S.C. Nefrologia e Dialisi, Azienda Ospefaliero-Universitaria di Perugia, Perugia, Italy; Department of Kidney Transplantation, Russian Children's Federal Clinical Hospital of Pirogov Russian National Research Medical University, Moscow, Russia; Department of Pediatric Nephrology, University Hospital Vall d'Hebron, Barcelona, Spain; Faculty of Medicine Seyhan, Adana Dr. Turgut Noyan Training and Research Center, Department of Pediatric Nephrology, Başkent University, Adana, Turkey; Department of Pediatric Nephrology, Hannover Medical School, Hannover, Germany; 1st Pediatric Department, Aristotle University of Thessaloniki, Thessaloniki, Greece; 1st Department of Pediatrics, Semmelweis University Budapest, Budapest, Hungary; Pediatric Nephrology Unit, University Hospital of Nantes, Nantes, France; Department ofNephrology, Kidney Transplantation & Hypertension, The Children's Memorial Health Institute, Warsaw, Poland; Department of Nephrology, University Children's hospital, Belgrade, Serbia; Department of Pediatrics, University Hospital Motol, 2nd Medical Faculty and Faculty of Medicine in Plzen, Charles University Prague and Biomedical Centre, Prague, Czech Republic; Department of Pediatric Nephrology, Evelina London Children's Hospital, Guy's and St. Thomas' Hospital NHS Foundation Trust, London, United Kingdom; Division of Pediatrics, Department of Medicine, University of Udine, Udine, Italy; Pediatric Nephrology Unit, Bordeaux University Hospital, Bordeaux, France; Amsterdam UMC, University of Amsterdam, Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Meibergdreef 9, Amsterdam, the Netherlands.

Background: Many centers accept a minimum body weight of 10 kg as threshold for kidney transplantation (Tx) in children. As solid evidence for clinical outcomes in multinational studies is lacking, we evaluated practices and outcomes in European children weighing below 10 kg at Tx.

Methods: Data were obtained from the ESPN/ERA-EDTA Registry on all children who started kidney replacement therapy (KRT) at <2.5 years of age and received a Tx between 2000 and 2016. Weight at Tx was categorized (<10 kg versus ≥10 kg) and Cox regression analysis was used to evaluate its association with graft survival.

Results: One hundred of the 601 children received a Tx below a weight of 10 kg during the study period. Primary renal disease groups were equal, but Tx <10 kg patients had lower pre-Tx weight gain per year (0.2 kg versus 2.1 kg; p<0.001) and had a higher preemptive Tx rate (23% versus 7%; p<0.001). No differences were found for posttransplant estimated glomerular filtration rates (eGFR) trajectories (p=0.23).The graft failure risk was higher in Tx <10 kg patients at 1 year (graft survival: 90% versus 95%; aHR: 3.84, 95% CI: 1.24-11.84), but not at 5 years (aHR: 1.71, 95% CI: 0.68-4.30).

Conclusions: Despite a lower 1-year graft survival rate, graft function and survival at 5 years were identical in Tx <10 kg patients when compared with Tx ≥10 kg patients. Our results suggest that early transplantation should be offered to a carefully selected group of patients weighing <10 kg.
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http://dx.doi.org/10.1097/TP.0000000000003771DOI Listing
March 2021

Assessing physical activity and function in patients with chronic kidney disease: a narrative review.

Clin Kidney J 2021 Mar 8;14(3):768-779. Epub 2020 Sep 8.

ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Physical activity potentially improves health outcomes in patients with chronic kidney disease (CKD) and recipients of kidney transplants. Although studies have demonstrated the beneficial effects of physical activity and exercise for primary and secondary prevention of non-communicable diseases, evidence for kidney patients is limited. To enlarge this evidence, valid assessment of physical activity and exercise is essential. Furthermore, CKD is associated with a decline in physical function, which may result in severe disabilities and dependencies. Assessment of physical function may help clinicians to monitor disease progression and frailty in patients receiving dialysis. The attention on physical function and physical activity has grown and new devices have been developed and (commercially) launched on the market. Therefore the aims of this review were to summarize different measures of physical function and physical activity, provide an update on measurement instruments and discuss options for easy-to-use measurement instruments for day-to-day use by CKD patients. This review demonstrates that large variation exists in the different strategies to assess physical function and activity in clinical practice and research settings. To choose the best available method, accuracy, content, preferable outcome, necessary expertise, resources and time are important issues to consider.
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http://dx.doi.org/10.1093/ckj/sfaa156DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7986327PMC
March 2021

Points of attention when conducting etiological research.

Nephrology (Carlton) 2021 Mar 17. Epub 2021 Mar 17.

ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Epidemiological studies often aim to investigate the causal contribution of a risk factor to a disease or other outcome. In etiological research, one is usually interested in the (biological) mechanism(s) underlying the studied relationship. Inappropriate conduct of an etiological study may have major implications for the correctness of the results and interpretation of the findings. Therefore, in this paper, we aim to describe step by step how etiological research should be carried out, together with its  common pitfalls. These steps involve finding and formulating a well-defined etiological research question, choosing an appropriate study design including a suitable comparison group, adequate modelling, and adequate reporting and interpretation of the results.
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http://dx.doi.org/10.1111/nep.13875DOI Listing
March 2021

Kidney Failure Prediction Models: A Comprehensive External Validation Study in Patients with Advanced CKD.

J Am Soc Nephrol 2021 May 8;32(5):1174-1186. Epub 2021 Mar 8.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.

Background: Various prediction models have been developed to predict the risk of kidney failure in patients with CKD. However, guideline-recommended models have yet to be compared head to head, their validation in patients with advanced CKD is lacking, and most do not account for competing risks.

Methods: To externally validate 11 existing models of kidney failure, taking the competing risk of death into account, we included patients with advanced CKD from two large cohorts: the European Quality Study (EQUAL), an ongoing European prospective, multicenter cohort study of older patients with advanced CKD, and the Swedish Renal Registry (SRR), an ongoing registry of nephrology-referred patients with CKD in Sweden. The outcome of the models was kidney failure (defined as RRT-treated ESKD). We assessed model performance with discrimination and calibration.

Results: The study included 1580 patients from EQUAL and 13,489 patients from SRR. The average statistic over the 11 validated models was 0.74 in EQUAL and 0.80 in SRR, compared with 0.89 in previous validations. Most models with longer prediction horizons overestimated the risk of kidney failure considerably. The 5-year Kidney Failure Risk Equation (KFRE) overpredicted risk by 10%-18%. The four- and eight-variable 2-year KFRE and the 4-year Grams model showed excellent calibration and good discrimination in both cohorts.

Conclusions: Some existing models can accurately predict kidney failure in patients with advanced CKD. KFRE performed well for a shorter time frame (2 years), despite not accounting for competing events. Models predicting over a longer time frame (5 years) overestimated risk because of the competing risk of death. The Grams model, which accounts for the latter, is suitable for longer-term predictions (4 years).
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http://dx.doi.org/10.1681/ASN.2020071077DOI Listing
May 2021

Patient-reported factors influencing the choice of their kidney replacement treatment modality.

Nephrol Dial Transplant 2021 Mar 2. Epub 2021 Mar 2.

ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Background: Access to various kidney replacement therapy (KRT) modalities for patients with end-stage kidney disease differs substantially within Europe.

Methods: European adults on KRT filled out an online or paper-based survey about factors influencing and experiences with modality choice (e.g. information provision, decision-making, reasons for choice) between November 2017 and January 2019. We compared countries with low-, middle- and high-Gross Domestic Product (GDP).

Results: 7,820 patients (mean age 59 years, 56% male, 63% on centre haemodialysis [CHD]) from 38 countries participated. Twenty-five percent had received no information on the different modalities and only 23% received information more than 12 months before KRT initiation. Patients were not informed about home haemodialysis [HHD] (42%) and comprehensive conservative management (33%). Besides nephrologists, nurses more frequently provided information in high-GDP countries whereas other physicians than nephrologists did so in low-GDP countries. Patients from low-GDP countries reported later information provision, less information about other modalities than CHD and lower satisfaction with information. The majority of modality decisions were made involving both patient and nephrologist. Patients reported subjective (e.g. quality of life, fears) and objective reasons (e.g. costs, availability of treatments) for modality choice. Patients had good experiences with all modalities, but experiences were better for HHD and kidney transplantation, and in middle- and high-GDP countries.

Conclusion: Our results suggest European differences in patient-reported factors influencing KRT modality choice, possibly caused by disparities in availability of KRT modalities, different healthcare systems and varying patients' preferences. Availability of home dialysis and kidney transplantation should be optimized.
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http://dx.doi.org/10.1093/ndt/gfab059DOI Listing
March 2021

Does kidney transplantation with a standard or expanded criteria donor improve patient survival? Results from a Belgian cohort.

Nephrol Dial Transplant 2021 Apr;36(5):918-926

Department of Medical Informatics, ERA-EDTA Registry, Amsterdam UMC, Academic Medical Center, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands.

Background: Changes in recipient and donor factors have reopened the question of survival benefits of kidney transplantation versus dialysis.

Methods: We analysed survival among 3808 adult Belgian patients waitlisted for a first deceased donor kidney transplant from 2000 to 2012. The primary outcome was mortality during the median waiting time plus 3 years of follow-up after transplantation or with continued dialysis. Outcomes were analysed separately for standard criteria donor (SCD) and expanded criteria donor (ECD) kidney transplants. We adjusted survival analyses for recipient age (20-44, 45-64 and ≥65 years), sex and diabetes as the primary renal disease.

Results: Among patients ≥65 years of age, only SCD transplantation provided a significant survival benefit compared with dialysis, with a mortality of 16.3% [95% confidence interval (CI) 13.2-19.9] with SCD transplantation, 20.5% (95% CI 16.1-24.6) with ECD transplantation and 24.6% (95% CI 19.4-29.5) with continued dialysis. Relative mortality risk was increased in the first months after transplantation compared with dialysis, with equivalent risk levels reached earlier with SCD than ECD transplantation in all age groups.

Conclusions: The results of this study suggest that older patients might gain a survival benefit with SCD transplantation versus dialysis, but any survival benefit with ECD transplantation versus dialysis may be small.
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http://dx.doi.org/10.1093/ndt/gfab024DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8075371PMC
April 2021

Be careful with ecological associations.

Nephrology (Carlton) 2021 Jun 17;26(6):501-505. Epub 2021 Feb 17.

Institute of Clinical Physiology (IFC-CNR), Clinical Epidemiology and Physiopathology of Renal Diseases and Hypertension of Reggio Calabria, Reggio Calabria, Italy.

Ecological studies are observational studies commonly used in public health research. The main characteristic of this study design is that the statistical analysis is based on pooled (i.e., aggregated) rather than on individual data. Thus, patient-level information such as age, gender, income and disease condition are not considered as individual characteristics but as mean values or frequencies, calculated at country or community level. Ecological studies can be used to compare the aggregated prevalence and incidence data of a given condition across different geographical areas, to assess time-related trends of the frequency of a pre-defined disease/condition, to identify factors explaining changes in health indicators over time in specific populations, to discriminate genetic from environmental causes of geographical variation in disease, or to investigate the relationship between a population-level exposure and a specific disease or condition. The major pitfall in ecological studies is the ecological fallacy, a bias which occurs when conclusions about individuals are erroneously deduced from results about the group to which those individuals belong. In this paper, by using a series of examples, we provide a general explanation of the ecological studies and provide some useful elements to recognize or suspect ecological fallacy in this type of studies.
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http://dx.doi.org/10.1111/nep.13861DOI Listing
June 2021

A roadmap for optimizing chronic kidney disease patient care and patient-oriented research in the Eastern European nephrology community.

Clin Kidney J 2021 Jan 22;14(1):23-35. Epub 2020 Dec 22.

Division of Nephrology, Ambroise Paré University Hospital, APHP, University of Paris Ouest-Versailles-St-Quentin-en-Yvelines (UVSQ) av G De Gaulles Boulogne-Billancourt/Paris, x, FR 92100; Inserm U1018, CESP Team 5-Epidemiology of Renal and Cardiovascular Disease, Villejuif, France.

Chronic kidney disease (CKD) is a major health problem because of its high prevalence, associated complications and high treatment costs. Several aspects of CKD differ significantly in the Eastern European nephrology community compared with Western Europe because of different geographic, socio-economic, infrastructure, cultural and educational features. The two most frequent aetiologies of CKD, DM and hypertension, and many other predisposing factors, are more frequent in the Eastern region, resulting in more prevalent CKD Stages 3-5. Interventions may minimize the potential drawbacks of the high prevalence of CKD in Eastern Europe, which include several options at various stages of the disease, such as raising public, medical personnel and healthcare authorities awareness; early detection by screening high-risk populations; preventing progression and CKD-related complications by training health professionals and patients; promoting transplantation or home dialysis as the preferred modality; disseminating and implementing guidelines and guided therapy and encouraging/supporting country-specific observational research as well as international collaborative projects. Specific ways to significantly impact CKD-related problems in every region of Europe through education, science and networking are collaboration with non-nephrology European societies who have a common interest in CKD and its associated complications, representation through an advisory role within nephrology via national nephrology societies, contributing to the training of local nephrologists and stimulating patient-oriented research. The latter is mandatory to identify country-specific kidney disease-related priorities. Active involvement of patients in this research via collaboration with the European Kidney Patient Federation or national patient federations is imperative to ensure that projects reflect specific patient needs.
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http://dx.doi.org/10.1093/ckj/sfaa218DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7857792PMC
January 2021

The ERA-EDTA Registry Annual Report 2018: a summary.

Clin Kidney J 2021 Jan 24;14(1):107-123. Epub 2020 Dec 24.

Health Quality Assessment and Information System Service, Dirección General de Programas Asistenciales, Servicio Canario de la Salud, Canary Islands, Spain.

Background: The European Renal Association - European Dialysis and Transplant Association (ERA-EDTA) Registry collects data on kidney replacement therapy (KRT) via national and regional renal registries in Europe and countries bordering the Mediterranean Sea. This article summarizes the 2018 ERA-EDTA Registry Annual Report, and describes the epidemiology of KRT for kidney failure in 34 countries.

Methods: Individual patient data on patients undergoing KRT in 2018 were provided by 34 national or regional renal registries and aggregated data by 17 registries. The incidence and prevalence of KRT, the kidney transplantation activity and the survival probabilities of these patients were calculated.

Results: In 2018, the ERA-EDTA Registry covered a general population of 636 million people. Overall, the incidence of KRT for kidney failure was 129 per million population (p.m.p.), 62% of patients were men, 51% were ≥65 years of age and 20% had diabetes mellitus as cause of kidney failure. Treatment modality at the onset of KRT was haemodialysis (HD) for 84%, peritoneal dialysis (PD) for 11% and pre-emptive kidney transplantation for 5% of patients. On 31 December 2018, the prevalence of KRT was 897 p.m.p., with 57% of patients on HD, 5% on PD and 38% living with a kidney transplant. The transplant rate in 2018 was 35 p.m.p.: 68% received a kidney from a deceased donor, 30% from a living donor and for 2% the donor source was unknown. For patients commencing dialysis during 2009-13, the unadjusted 5-year survival probability was 42.6%. For patients receiving a kidney transplant within this period, the unadjusted 5-year survival probability was 86.6% for recipients of deceased donor grafts and 93.9% for recipients of living donor grafts.
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http://dx.doi.org/10.1093/ckj/sfaa271DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7857839PMC
January 2021

Health claims databases used for kidney research around the world.

Clin Kidney J 2021 Jan 27;14(1):84-97. Epub 2020 Jun 27.

Department of Medical Informatics, Amsterdam UMC, Amsterdam Public Health Research Institute, University of Amsterdam, Amsterdam, The Netherlands.

Health claims databases offer opportunities for studies on large populations of patients with kidney disease and health outcomes in a non-experimental setting. Among others, their unique features enable studies on healthcare costs or on longitudinal, epidemiological data with nationwide coverage. However, health claims databases also have several limitations. Because clinical data and information on renal function are often lacking, the identification of patients with kidney disease depends on the actual presence of diagnosis codes only. Investigating the validity of these data is therefore crucial to assess whether outcomes derived from health claims data are truly meaningful. Also, one should take into account the coverage and content of a health claims database, especially when making international comparisons. In this article, an overview is provided of international health claims databases and their main publications in the area of nephrology. The structure and contents of the Dutch health claims database will be described, as well as an initiative to use the outcomes for research and the development of the Dutch Kidney Atlas. Finally, we will discuss to what extent one might be able to identify patients with kidney disease using health claims databases, as well as their strengths and limitations.
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http://dx.doi.org/10.1093/ckj/sfaa076DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7857833PMC
January 2021

External validation of prognostic models: what, why, how, when and where?

Clin Kidney J 2021 Jan 24;14(1):49-58. Epub 2020 Nov 24.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.

Prognostic models that aim to improve the prediction of clinical events, individualized treatment and decision-making are increasingly being developed and published. However, relatively few models are externally validated and validation by independent researchers is rare. External validation is necessary to determine a prediction model's reproducibility and generalizability to new and different patients. Various methodological considerations are important when assessing or designing an external validation study. In this article, an overview is provided of these considerations, starting with what external validation is, what types of external validation can be distinguished and why such studies are a crucial step towards the clinical implementation of accurate prediction models. Statistical analyses and interpretation of external validation results are reviewed in an intuitive manner and considerations for selecting an appropriate existing prediction model and external validation population are discussed. This study enables clinicians and researchers to gain a deeper understanding of how to interpret model validation results and how to translate these results to their own patient population.
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http://dx.doi.org/10.1093/ckj/sfaa188DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7857818PMC
January 2021

Mortality in Children Treated With Maintenance Peritoneal Dialysis: Findings From the International Pediatric Peritoneal Dialysis Network Registry.

Am J Kidney Dis 2021 Feb 5. Epub 2021 Feb 5.

Division of Pediatric Nephrology, Center for Pediatrics and Adolescent Medicine, Heidelberg University, Heidelberg, Germany.

Rationale & Objective: Research on pediatric kidney replacement therapy (KRT) has primarily focused on Europe and North America. In this study, we describe the mortality risk of children treated with maintenance peritoneal dialysis (MPD) in different parts of the world and characterize the associated demographic and macroeconomic factors.

Study Design: Prospective cohort study.

Setting & Participants: Patients younger than 19 years at inclusion into the International Pediatric Peritoneal Dialysis Network registry, who initiated MPD between 1996 and 2017.

Exposure: Region as primary exposure (Asia, Western Europe, Eastern Europe, Latin America, North America, and Oceania). Other demographic, clinical, and macroeconomic (4 income groups based on gross national income) factors also were studied.

Outcome: All-cause MPD mortality.

Analytical Approach: Patients were observed for 3 years, and the mortality rates in different regions and income groups were calculated. Cause-specific hazards models with random effects were fit to calculate the proportional change in variance for factors that could explain variation in mortality rates.

Results: A total of 2,956 patients with a median age of 7.8 years at the start of KRT were included. After 3 years, the overall probability of death was 5%, ranging from 2% in North America to 9% in Eastern Europe. Mortality rates were higher in low-income countries than in high-income countries. Income category explained 50.1% of the variance in mortality risk between regions. Other explanatory factors included peritoneal dialysis modality at start (22.5%) and body mass index (11.1%).

Limitations: The interpretation of interregional survival differences as found in this study may be hampered by selection bias.

Conclusions: This study shows that the overall 3-year patient survival on pediatric MPD is high, and that country income is associated with patient survival.
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http://dx.doi.org/10.1053/j.ajkd.2020.11.031DOI Listing
February 2021

Effect of comorbidities on survival in patients >80 years of age at onset of renal replacement therapy: data from the ERA-EDTA Registry.

Nephrol Dial Transplant 2021 Mar;36(4):688-694

Finnish Registry for Kidney Diseases, Helsinki, Finland.

Background: The number of elderly patients on renal replacement therapy (RRT) is increasing. The survival and quality of life of these patients may be lower if they have multiple comorbidities at the onset of RRT. The aim of this study was to explore whether the effect of comorbidities on survival is similar in elderly RRT patients compared with younger ones.

Methods: Included were 9333 patients ≥80 years of age and 48 352 patients 20-79 years of age starting RRT between 2010 and 2015 from 15 national or regional registries submitting data to the European Renal Association-European Dialysis and Transplantation Association Registry. Patients were followed until death or the end of 2016. Survival was assessed by Kaplan-Meier curves and the relative risk of death associated with comorbidities was assessed by Cox regression analysis.

Results: Patients ≥80 years of age had a greater comorbidity burden than younger patients. However, relative risks of death associated with all studied comorbidities (diabetes, ischaemic heart disease, chronic heart failure, cerebrovascular disease, peripheral vascular disease and malignancy) were significantly lower in elderly patients compared with younger patients. Also, the increase in absolute mortality rates associated with an increasing number of comorbidities was smaller in elderly patients.

Conclusions: Comorbidities are common in elderly patients who enter RRT, but the risk of death associated with comorbidities is less than in younger patients. This should be taken into account when assessing the prognosis of elderly RRT patients.
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http://dx.doi.org/10.1093/ndt/gfaa278DOI Listing
March 2021

Results of the European EDITH nephrologist survey on factors influencing treatment modality choice for end-stage kidney disease

Nephrol Dial Transplant 2021 01 22. Epub 2021 Jan 22.

ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.

Background: Access to forms of dialysis, kidney transplantation (Tx) and comprehensive conservative management (CCM) for patients with end-stage kidney disease (ESKD) varies across European countries. Attitudes of nephrologists, information provision and decision-making may influence this access and nephrologists may experience several barriers when providing treatments for ESKD.

Methods: We surveyed European nephrologists and kidney transplant surgeons treating adults with ESKD about factors influencing modality choice. Descriptive statistics were used to compare the opinions of professionals from European countries with low-, middle- and high-gross domestic product purchasing power parity (GDP PPP).

Results: In total, 681 professionals from 33 European countries participated. Respondents from all GDP categories indicated that ∼10% of patients received no information before the start of renal replacement therapy (RRT) (P = 0.106). Early information provision and more involvement of patients in decision-making were more frequently reported in middle- and high-GDP countries (P < 0.05). Professionals' attitudes towards several treatments became more positive with increasing GDP (P < 0.05). Uptake of in-centre haemodialysis was sufficient to 73% of respondents, but many wanted increased uptake of home dialysis, Tx and CCM. Respondents experienced different barriers according to availability of specific treatments in their centre. The occurrence of barriers (financial, staff shortage, lack of space/supplies and patient related) decreased with increasing GDP (P < 0.05).

Conclusions: Differences in factors influencing modality choice when providing RRT or CCM to adults with ESKD were found among low-, middle- and high-GDP countries in Europe. Therefore a unique pan-European policy to improve access to treatments may be inefficient. Different policies for clusters of countries could be more useful.
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http://dx.doi.org/10.1093/ndt/gfaa342DOI Listing
January 2021

Ten-year trends in epidemiology and outcomes of pediatric kidney replacement therapy in Europe: data from the ESPN/ERA-EDTA Registry.

Pediatr Nephrol 2021 Jan 22. Epub 2021 Jan 22.

Department of Pediatrics, Bordeaux University Hospital, Bordeaux Population Health Research Center UMR 1219, University of Bordeaux, Bordeaux, France.

Background: For 10 consecutive years, the ESPN/ERA-EDTA Registry has included data on children with stage 5 chronic kidney disease (CKD 5) receiving kidney replacement therapy (KRT) in Europe. We examined trends in incidence and prevalence of KRT and patient survival.

Methods: We included all children aged <15 years starting KRT 2007-2016 in 22 European countries participating in the ESPN/ERA-EDTA Registry since 2007. General population statistics were derived from Eurostat. Incidence and prevalence were expressed per million age-related population (pmarp) and time trends studied with JoinPoint regression. We analyzed survival trends using Cox regression.

Results: Incidence of children commencing KRT <15 years remained stable over the study period, varying between 5.5 and 6.6 pmarp. Incidence by treatment modality was unchanged over time: 2.0 for hemodialysis (HD) and peritoneal dialysis (PD) and 1.0 for transplantation. Prevalence increased in all age categories and overall rose 2% annually from 26.4 pmarp in 2007 to 32.1 pmarp in 2016. Kidney transplantation prevalence increased 5.1% annually 2007-2009, followed by 1.5% increase/year until 2016. Prevalence of PD steadily increased 1.4% per year over the entire period, and HD prevalence started increasing 6.1% per year from 2011 onwards. Five-year unadjusted patient survival on KRT was around 94% and similar for those initiating KRT 2007-2009 or 2010-2012 (adjusted HR: 0.98, 95% CI:0.71-1.35).

Conclusions: We found a stable incidence and increasing prevalence of European children on KRT 2007-2016. Five-year patient survival was good and was unchanged over time. These data can inform patients and healthcare providers and aid health policy makers on future resource planning of pediatric KRT in Europe.
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http://dx.doi.org/10.1007/s00467-021-04928-wDOI Listing
January 2021

Using datasets to ascertain the generalisability of clinical cohorts: the example of European QUALity Study on the treatment of advanced chronic kidney disease (EQUAL).

Nephrol Dial Transplant 2021 Jan 11. Epub 2021 Jan 11.

Population Health Sciences, University of Bristol, Bristol.

Background: Cohort studies are among the most robust of observational studies but have issues with external validity. This study assesses threats to external validity (generalisability) in the European QUALity (EQUAL) study, a cohort study of people over 65 years with stage 4/5 chronic kidney disease.

Methods: Patients meeting the EQUAL inclusion criteria were identified in The Health Improvement Network database and stratified into those attending renal units (secondary care cohort-SCC) and not (primary care cohort-PCC). Survival, progression to renal replacement therapy (RRT), and hospitalisation were compared.

Results: The analysis included 250, 633, and 2,464 patients in EQUAL, PCC, and SCC. EQUAL had a higher proportion of men in comparison to PCC and SCC (60.0% vs. 34.8% vs. 51.4%). Increasing age (≥85 years odds ratio (OR) 0.25 (95% confidence interval (CI) 0.15-0.40)) and comorbidity (Charlson Comorbidity Index ≥ 4 OR 0.69 (CI 0.52-0.91)) were associated with non-participation in EQUAL. EQUAL had a higher proportion of patients starting RRT at 1 year compared to SCC (8.1% vs. 2.1%%, p < 0.001). Patients in the PCC and SCC had increased risk of Hospitalisation (incidence rate ratio=1.76 (95% CI 1.27-2.47) & 2.13 (95% CI 1.59-2.86)) and mortality at one year (hazard ratio=3.48 (95% CI 2.1-5.7) & 1.7 (95% CI 1.1-2.7)) compared to EQUAL.

Conclusions: This study provides evidence of how participants in a cohort study can differ from the broader population of patients, which is essential when considering external validity and applying to local practice.
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http://dx.doi.org/10.1093/ndt/gfab002DOI Listing
January 2021

Supplemented ERA-EDTA Registry data evaluated the frequency of dialysis, kidney transplantation, and comprehensive conservative management for patients with kidney failure in Europe.

Kidney Int 2021 Jan 7. Epub 2021 Jan 7.

Department of Nephrology, Cerrahpasa Medical Faculty, Istanbul University-Cerrahpasa, Istanbul, Turkey.

The aims of this study were to determine the frequency of dialysis and kidney transplantation and to estimate the regularity of comprehensive conservative management (CCM) for patients with kidney failure in Europe. This study uses data from the ERA-EDTA Registry. Additionally, our study included supplemental data from Armenia, Germany, Hungary, Ireland, Kosovo, Luxembourg, Malta, Moldova, Montenegro, Slovenia and additional data from Israel, Italy, Slovakia using other information sources. Through an online survey, responding nephrologists estimated the frequency of CCM (i.e. planned holistic care instead of kidney replacement therapy) in 33 countries. In 2016, the overall incidence of replacement therapy for kidney failure was 132 per million population (pmp), varying from 29 (Ukraine) to 251 pmp (Greece). On 31 December 2016, the overall prevalence of kidney replacement therapy was 985 pmp, ranging from 188 (Ukraine) to 1906 pmp (Portugal). The prevalence of peritoneal dialysis (114 pmp) and home hemodialysis (28 pmp) was highest in Cyprus and Denmark respectively. The kidney transplantation rate was nearly zero in some countries and highest in Spain (64 pmp). In 28 countries with five or more responding nephrologists, the median percentage of candidates for kidney replacement therapy who were offered CCM in 2018 varied between none (Slovakia and Slovenia) and 20% (Finland) whereas the median prevalence of CCM varied between none (Slovenia) and 15% (Hungary). Thus, the substantial differences across Europe in the frequency of kidney replacement therapy and CCM indicate the need for improvement in access to various treatment options for patients with kidney failure.
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http://dx.doi.org/10.1016/j.kint.2020.12.010DOI Listing
January 2021

Recovery of kidney function in patients treated with maintenance dialysis-a report from the ERA-EDTA registry.

Nephrol Dial Transplant 2020 Dec 23. Epub 2020 Dec 23.

ERA-EDTA Registry, Department of Medical Informatics, Amsterdam University Medical Center, University of Amsterdam, Amsterdam Public Health research institute, Amsterdam, The Netherlands.

Background: Literature on recovery of kidney function (RKF) in patients with end-stage kidney disease treated with maintenance dialysis (i.e. over 90 days) is limited. We assessed the incidence of RKF and its associated characteristics in a European cohort of dialysis patients.

Methods: We included adult patients from the European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry who started maintenance dialysis in 1997-2016. Sustained RKF was defined as permanent discontinuation of dialysis. Temporary discontinuation of ≥ 30 days (non-sustained RKF) was also evaluated. Factors associated with RKF adjusted for potential confounders were studied using Cox-regression analyses.

Results: RKF occurred in 7,657 (1.8%) of 440,996 patients of whom 71% experienced sustained RKF. Approximately 90% of all recoveries occurred within the first two years after day 91 of dialysis. Of patients with non-sustained RKF, 39% restarted kidney replacement therapy within one year. Sustained RKF was strongly associated with the following underlying kidney diseases (as registered by the treating physician): tubular necrosis (irreversible) or cortical necrosis (adjusted Hazard Ratio [aHR]: 20.4, 95%CI: 17.9-23.1), systemic sclerosis (aHR: 18.5, 95%CI: 13.8-24.7) and hemolytic uremic syndrome (aHR: 17.3, 95%CI: 13.9-21.6). Weaker associations were found for hemodialysis as first dialysis-modality (aHR: 1.5, 95%CI: 1.4-1.6) and dialysis initiation at an older age (aHR: 1.8, 95%CI: 1.6-2.0) or in a more recent time-period (aHR: 2.4, 95%CI: 2.1-2.7).

Conclusions: Definitive discontinuation of maintenance dialysis is a rare and not necessarily an early event. Certain clinical characteristics, but mostly the type of underlying kidney disease, are associated with a higher likelihood of RKF.
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http://dx.doi.org/10.1093/ndt/gfaa368DOI Listing
December 2020

Availability, coverage, and scope of health information systems for kidney care across world countries and regions.

Nephrol Dial Transplant 2020 Dec 22. Epub 2020 Dec 22.

Department of Medicine, Faculty of Medicine, King Chulalong Memorial Hospital, Chulalongkorn University, Bangkok,Thailand.

Background: Health information systems (HIS) are fundamental tools for the surveillance of health services, estimation of disease burden and prioritization of health resources. Several gaps in the availability of HIS for kidney disease were highlighted by the first iteration of the Global Kidney Health Atlas.

Methods: As part of its second iteration, the International Society of Nephrology conducted a cross-sectional global survey between July and October 2018 to explore the coverage and scope of HIS for kidney disease, with a focus on kidney replacement therapy (KRT).

Results: Out of a total of 182 invited countries, 154 countries responded to questions on HIS (85% response rate). KRT registries were available in almost all high-income countries, but few low-income countries, while registries for non-dialysis chronic kidney disease (CKD) or acute kidney injury (AKI) were rare. Registries in high-income countries tended to be national, in contrast to registries in low-income countries, which often operated at local or regional levels. Although cause of end-stage kidney disease, modality of KRT and source of kidney transplant donors were frequently reported, few countries collected data on patient-reported outcome measures and only half of low-income countries recorded process-based measures. Almost no countries had programs to detect AKI and practices to identify CKD-targeted individuals with diabetes, hypertension and cardiovascular disease, rather than members of high-risk ethnic groups.

Conclusions: These findings confirm significant heterogeneity in the global availability of HIS for kidney disease and highlight important gaps in their coverage and scope, especially in low-income countries and across the domains of AKI, non-dialysis CKD, patient-reported outcomes, process-based measures and quality indicators for KRT service delivery.
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http://dx.doi.org/10.1093/ndt/gfaa343DOI Listing
December 2020

Patient-reported outcome measures ( PROMs): making sense of individual PROM scores and changes in PROM scores over time.

Nephrology (Carlton) 2021 May 25;26(5):391-399. Epub 2020 Dec 25.

Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands.

Patient-reported outcome measures (PROMs) are increasingly being used in nephrology care. However, in contrast to well-known clinical measures such as blood pressure, health-care professionals are less familiar with PROMs and the interpretation of PROM scores is therefore perceived as challenging. In this paper, we provide insight into the interpretation of PROM scores by introducing the different types and characteristics of PROMs, and the most relevant concepts for the interpretation of PROM scores. Concepts such as minimal detectable change, minimal important change and response shift are explained and illustrated with examples from nephrology care.
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http://dx.doi.org/10.1111/nep.13843DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8048666PMC
May 2021

Availability, Accessibility, and Quality of Conservative Kidney Management Worldwide.

Clin J Am Soc Nephrol 2020 Dec 15;16(1):79-87. Epub 2020 Dec 15.

Department of Medicine, University of Calgary, Calgary, Alberta, Canada.

Background And Objectives: People with kidney failure typically receive KRT in the form of dialysis or transplantation. However, studies have suggested that not all patients with kidney failure are best suited for KRT. Additionally, KRT is costly and not always accessible in resource-restricted settings. Conservative kidney management is an alternate kidney failure therapy that focuses on symptom management, psychologic health, spiritual care, and family and social support. Despite the importance of conservative kidney management in kidney failure care, several barriers exist that affect its uptake and quality.

Design, Setting, Participants, & Measurements: The Global Kidney Health Atlas is an ongoing initiative of the International Society of Nephrology that aims to monitor and evaluate the status of global kidney care worldwide. This study reports on findings from the 2018 Global Kidney Health Atlas survey, specifically addressing the availability, accessibility, and quality of conservative kidney management.

Results: Respondents from 160 countries completed the survey, and 154 answered questions pertaining to conservative kidney management. Of these, 124 (81%) stated that conservative kidney management was available. Accessibility was low worldwide, particularly in low-income countries. Less than half of countries utilized multidisciplinary teams (46%); utilized shared decision making (32%); or provided psychologic, cultural, or spiritual support (36%). One-quarter provided relevant health care providers with training on conservative kidney management delivery.

Conclusions: Overall, conservative kidney management is available in most countries; however, it is not optimally accessible or of the highest quality.
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http://dx.doi.org/10.2215/CJN.09070620DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7792657PMC
December 2020

COVID-19-related mortality in kidney transplant and dialysis patients: results of the ERACODA collaboration.

Nephrol Dial Transplant 2020 11;35(11):1973-1983

Department of Internal Medicine, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.

Background: Patients on kidney replacement therapy comprise a vulnerable population and may be at increased risk of death from coronavirus disease 2019 (COVID-19). Currently, only limited data are available on outcomes in this patient population.

Methods: We set up the ERACODA (European Renal Association COVID-19 Database) database, which is specifically designed to prospectively collect detailed data on kidney transplant and dialysis patients with COVID-19. For this analysis, patients were included who presented between 1 February and 1 May 2020 and had complete information available on the primary outcome parameter, 28-day mortality.

Results: Of the 1073 patients enrolled, 305 (28%) were kidney transplant and 768 (72%) dialysis patients with a mean age of 60 ± 13 and 67 ± 14 years, respectively. The 28-day probability of death was 21.3% [95% confidence interval (95% CI) 14.3-30.2%] in kidney transplant and 25.0% (95% CI 20.2-30.0%) in dialysis patients. Mortality was primarily associated with advanced age in kidney transplant patients, and with age and frailty in dialysis patients. After adjusting for sex, age and frailty, in-hospital mortality did not significantly differ between transplant and dialysis patients [hazard ratio (HR) 0.81, 95% CI 0.59-1.10, P = 0.18]. In the subset of dialysis patients who were a candidate for transplantation (n = 148), 8 patients died within 28 days, as compared with 7 deaths in 23 patients who underwent a kidney transplantation <1 year before presentation (HR adjusted for sex, age and frailty 0.20, 95% CI 0.07-0.56, P < 0.01).

Conclusions: The 28-day case-fatality rate is high in patients on kidney replacement therapy with COVID-19 and is primarily driven by the risk factors age and frailty. Furthermore, in the first year after kidney transplantation, patients may be at increased risk of COVID-19-related mortality as compared with dialysis patients on the waiting list for transplantation. This information is important in guiding clinical decision-making, and for informing the public and healthcare authorities on the COVID-19-related mortality risk in kidney transplant and dialysis patients.
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http://dx.doi.org/10.1093/ndt/gfaa261DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7665620PMC
November 2020

The association of living donor source with patient and graft survival among kidney transplant recipients in the ERA-EDTA Registry - a retrospective study.

Transpl Int 2021 Jan 26;34(1):76-86. Epub 2020 Oct 26.

Department of Medical Informatics, ERA-EDTA Registry, Amsterdam UMC, Amsterdam Public Health Research Institute, University of Amsterdam, Amsterdam, the Netherlands.

In this study we aimed to compare patient and graft survival of kidney transplant recipients who received a kidney from a living-related donor (LRD) or living-unrelated donor (LUD). Adult patients in the ERA-EDTA Registry who received their first kidney transplant in 1998-2017 were included. Ten-year patient and graft survival were compared between LRD and LUD transplants using Cox regression analysis. In total, 14 370 patients received a kidney from a living donor. Of those, 9212 (64.1%) grafts were from a LRD, 5063 (35.2%) from a LUD and for 95 (0.7%), the donor type was unknown. Unadjusted five-year risks of death and graft failure (including death as event) were lower for LRD transplants than for LUD grafts: 4.2% (95% confidence interval [CI]: 3.7-4.6) and 10.8% (95% CI: 10.1-11.5) versus 6.5% (95% CI: 5.7-7.4) and 12.2% (95% CI: 11.2-13.3), respectively. However, after adjusting for potential confounders, associations disappeared with hazard ratios of 0.99 (95% CI: 0.87-1.13) for patient survival and 1.03 (95% CI: 0.94-1.14) for graft survival. Unadjusted risk of death-censored graft failure was similar, but after adjustment, it was higher for LUD transplants (1.19; 95% CI: 1.04-1.35). In conclusion, patient and graft survival of LRD and LUD kidney transplant recipients was similar, whereas death-censored graft failure was higher in LUD. These findings confirm the importance of both living kidney donor types.
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http://dx.doi.org/10.1111/tri.13759DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7821376PMC
January 2021