Time trends in preemptive kidney transplantation in Europe: an era registry study.

BACKGROUND: Preemptive kidney transplantation has better outcomes when compared to transplantation after dialysis. We aimed to examine trends in preemptive kidney transplantation between 2000 and 2019 in Europe and to provide an overview of associated policies, barriers and initiatives. METHODS: Adult patients from 12 European countries who received a preemptive kidney transplant were included. The representatives of the registries providing these data were questioned on the policies, barriers and initiatives around preemptive kidney transplantation. RESULTS: Between 2000 and 2019, 20 251 adults underwent preemptive kidney transplantation (11 169 from living donors, 8937 from deceased donors). The proportion of first kidney transplantations that were preemptive more than doubled from 7% in 2000 to 18% in 2019, reflecting a similar relative increase for living donor kidney recipients (from 21% to 43%) and deceased donor kidney recipients (from 4% to 11%). Large international differences were found. The increase in preemptive kidney transplantation was observed across all age, sex and primary renal disease groups. Countries had similar criteria for preemptive waitlisting. Barriers mentioned included donor shortage, late referral to the transplant center and long donor or recipient work-up. Suggested initiatives included raising awareness on the possibility of preemptive kidney transplantation, earlier start and shorter work-up time for recipient and living donor. CONCLUSIONS: Over the last two decades the proportion of patients receiving a first kidney transplant preemptively has more than doubled, reflecting a similar relative increase for living and deceased donor kidney recipients.

Is social deprivation associated with the peritoneal dialysis outcomes? A cohort study with REIN registry data.

BACKGROUND: Social deprivation is associated with lower peritoneal dialysis (PD) uptake. This study was carried out to evaluate the role of social deprivation on the outcome of PD. METHODS: This was a retrospective study of data extracted from the Renal Epidemiology and Information Network registry for patients older than 18 years who started PD in metropolitan France between 1 January 2017 and 30 June 2018. The end of the observation period was 31 December 2020. The exposure was the European Deprivation Index calculated using the patient's address. The events of interest were death, transfer to haemodialysis (HD), transplantation and the composite event of death or transfer to HD. A Cox model and Fine and Gray model were used for the analysis. RESULTS: A total of 1581 patients were included, of whom 418 (26.5%) belonged to Quintile 5 of the European Deprivation Index (the most deprived patients). In the Cox model, the most deprived subjects did not have a greater risk of death (cause-specific hazard ratio (cs-HR): 0.76 [95% confidence interval (CI): 0.53-1.10], transfer to HD (cs-HR 1.37 [95% CI: 0.95-1.98]) or the composite event of death or transfer to HD (cs-HR: 1.08 [95% CI: 0.84-1.38]) or a lower risk of kidney transplantation (cs-HR: 0.73 [95% CI: 0.48-1.10]). In the competing risk analysis, the most deprived subjects had a higher risk of transfer to HD (subdistribution hazard ratio (sd-HR): 1.54 [95% CI: 1.08-2.19]) and lower access to kidney transplantation (sd-HR: 0.68 [0.46-0.99]). CONCLUSION: In PD patients, social deprivation was not associated with death or the composite event of death or transfer to HD. Socially deprived individuals had a greater risk of transfer to HD and lower access to kidney transplantation in the competing risk analysis.

Sex-related differences in pre-dialysis trajectories and dialysis initiation: A French nationwide retrospective study.

BACKGROUND: In the last two decades, sex and gender differences have been documented in chronic kidney disease (CKD) management, including access to renal replacement therapy and its outcomes. The objectives of this study were to 1) compare the pre-dialysis healthcare utilization in men and women, and 2) examine the sex-specific factors associated with emergency dialysis start. METHODS: Adult patients with CKD who started dialysis in France in 2015 were extracted from the Renal Epidemiology and Information Network registry. Patients were matched to the French National Health Data System database to extract healthcare utilization data for the 2 years before dialysis start. Frequencies and monthly rates of consultations and hospitalizations were compared between men and women. Logistic regression analyses were performed separately in the two groups. RESULTS: Among the 8856 patients included, 3161 (35.7%) were women. Median age (71 years) and estimated glomerular filtration rate (8.1 and 7.7 ml/min for men and women) were similar between groups at dialysis start. Monthly consultations rates with a general practitioner and nephrology-related care were similar between women and men. Some sex-specific differences were found: higher frequencies of consultations with a psychiatrist in women and more frequent hospitalizations for circulatory system diseases in men. Emergency dialysis start rate was 30% in both groups. Emergency dialysis start was associated with acute nephropathy, compared with slowly progressive nephropathy, in women but not in men (OR = 1.48, p<0.01 vs 1.15, p = 0.18). CONCLUSIONS: This study found similar quantitative pre-dialysis healthcare utilization in men and women. To better understand sex/gender differences in CKD care trajectories, future research should focus on patients with CKD who are unknown to nephrology services, on patients receiving conservative care and on the sex/gender-specific mechanisms underlying care decision-making.

Lower access to kidney transplantation for women in France is not explained by comorbidities and social deprivation.

BACKGROUND: Access to kidney transplantation (KT) remains challenging for patients with end-stage kidney disease. This study assessed women's access to KT in France by considering comorbidities and neighborhood social deprivation. METHODS: All incident 18-85-year-old patients starting dialysis in France between January 1, 2017 and December 31, 2019 were included. Three outcomes were assessed: (i) access to the KT waiting list after dialysis start, (ii) KT access after waitlisting, and (iii) KT access after dialysis start. Cox and Fine and Gray models were used. Gender-EDI and gender-age interactions were tested and analyses were performed among strata if required. RESULTS: 29,395 patients were included (35% of women). After adjusting for social deprivation and comorbidities, women were less likely to be waitlisted at 1 (adjHR: 0.91 [0.87-0.96]) and 3 years (adjHR: 0.87 [0.84-0.91]) post-dialysis initiation. This disparity concerned mainly ≥60-year-old women (adjHR: 0.76 [0.71-0.82] at 1 year and 0.75 [0.71-0.81] at 3 years). Access to KT, after 2 years of waitlisting was similar between genders. Access to KT was similar between genders at 3 years after dialysis start, but decreased for women after 4 years (adjHR: 0.93 [0.88-0.99]) and longer follow-up (adjHR: 0.90 [0.85-0.96]). CONCLUSIONS: In France, women are less likely to be waitlisted and undergo kidney transplantation. This is driven by the ≥60-year-old group and is not explained by comorbidities or social deprivation level.

Effectiveness and safety of direct oral anticoagulants versus vitamin K antagonists in patients on chronic dialysis: a nationwide registry study.

BACKGROUND AND HYPOTHESIS: Clinical trials of direct oral anticoagulants (DOAC) are scarce and inconclusive in patients who are receiving dialysis, for whom DOAC are not labelled in Europe. In a French nationwide registry study of patients on chronic dialysis, we compared the effectiveness and safety of off-label DOAC use vs. approved vitamin K antagonist (VKA). METHODS: Data on patients on dialysis were extracted from the French Renal Epidemiology and Information Network (REIN) registry and merged with data from the French national healthcare system database (Système National des Données de Santé, SNDS). Patients on dialysis who had initiated treatment with an oral anticoagulant between January 1st, 2012, and December 31st, 2020, were eligible for inclusion. The primary safety outcome was the occurrence of major bleeding events and the primary effectiveness outcome was the occurrence of thrombotic events. Using propensity-score-weighted cause-specific Cox regression, we compared the safety and effectiveness outcomes for DOAC and VKA. RESULTS: 8,954 patients received an oral anticoagulant (483 DOAC and 8,471 VKA) for the first time after the initiation of dialysis. Over a median [interquartile range] follow-up period of 1.7 [0.8-3.2] years, 2,567 patients presented a first thromboembolic event and 1,254 patients had a bleeding event. After propensity score adjustment, the risk of a thromboembolic event was significantly lower in patients treated with a DOAC than in patients treated with a VKA (weighted hazard ratio (wHR) [95% confidence interval (CI)]: 0.66 [0.46; 0.94]. A non-significant trend toward a lower risk of major bleeding events was found in DOAC-treated patients, relative to VKA-treated patients (wHR [95%CI]: 0.68 [0.41; 1.12]). The results were consistent across subgroups and in sensitivity analyses. CONCLUSIONS: In a large group of dialysis patients initiating an oral anticoagulant, the off-label use of DOACs was associated with a significantly lower risk of thromboembolic events and a non-significantly lower risk of bleeding, relative to VKA use. This provides reassurance regarding the off-label use of DOACs in people on dialysis.

Epidemiology of tobacco use in dialysis patients in France and survey of nephrologists' involvement in counseling on tobacco discontinuation.

BACKGROUND: Tobacco smoking is an independent risk factor for chronic kidney disease (CKD) and increases morbidity and mortality in CKD patients. The primary objective of the study was to investigate the epidemiology of smoking in patients undergoing maintenance dialysis in France. A second objective was to assess the involvement of nephrologists in supporting patients for smoking cessation. METHODS: Data on the smoking history of prevalent patients on maintenance dialysis in France between 2010 and 2020 were obtained from the REIN database (Renal Epidemiology and Information Network), updated by all French nephrology and dialysis centers. As for the support to smoking discontinuation, a questionnaire on smoking cessation assistance was sent to all members of the French Society of Nephrology, Dialysis and Transplantation (SFNDT). RESULTS: The proportion of current smokers among patients on maintenance dialysis was 10.4% in 2010, 11.2% in 2015 and 11.6% in 2020. A total of 228 nephrologists among the 790 members of the SFNDT participated in the survey (28.9%). Most respondents were women (57.3%), worked at a public hospital (61.1%), were under 40 years of age (51.3%) and had no history of smoking (60.8%). The majority reported asking patients about their smoking status and offering brief advice. Among respondents, 72.8% offered help with smoking cessation, 46.3% referred their smoking patients to a tobacco specialist, 51.8% reported prescribing drugs to quit tobacco, and 81.6% requested further training in how to support patients for smoking cessation. CONCLUSION: Smoking cessation training for nephrologists and dedicated programs for patients in nephrology units could improve our practices and decrease the high prevalence of smoking in patients with ESKD.

Twenty years of the French Renal Epidemiology and Information Network.

Background: The French Renal Epidemiology and Information Network (REIN) is 20 years old. It is not just a national data registry, but rather an epidemiological and informational network serving patients with chronic kidney disease, nephrology teams and health services. Methods: The past 10-year trends of the incidence and prevalence of renal replacement therapy by dialysis or kidney transplantation and waitlist activity are presented. To detect potential significant changes in trends from 2012 and 2021, a Joinpoint regression model was used. Results: The overall incidence of treated end-stage kidney disease (ESKD) was 169 per million population (pmp) in 2021. It was stable despite an increase in the incidence of diabetes. We found a decreasing trend in the proportion of patients starting dialysis in an emergency but an increase in those starting haemodialysis (HD) with a temporary catheter. Peritoneal dialysis decreased by 1.7% each year, whereas home HD, although involving only 1% of dialysis patients, increased by 10% each year. For patients not treated at home, the median time to drive from the patient's home to the dialysis unit was 17 min. The proportion of patients on the transplantation waitlist at the start of dialysis increased from 7% to 12%. Among the 111 263 new ESKD patients from 2012 to 2021, 8% received a first transplant at 1 year and 20% at 5 years. Among kidney transplant recipients, the mean time on the waitlist increased from 13.8 to 22.6 months. Living donor transplants increased in frequency, representing 15% of kidney transplants. Conclusions: Data from the REIN registry allow for the evaluation of needs and provide a planning tool for French authorities. The progressive implementation of automatic data retrieval from dialysis informatics charts might alleviate the burden of data collection. Furthermore, the research activity the REIN engenders, resulting in renewed confidence by health authorities in the dynamism of French nephrology, allows for an optimistic outlook for the REIN.

Effect of comorbidities on healthcare expenditures for patients on kidney replacement therapy considering the treatment modality and duration in a French cohort.

End-stage kidney disease (ESKD) is associated with a substantial economic burden. In France, the cost of care for such patients represents 2.5% of the total French healthcare expenditures but serves less than 1% of the population. These patients' healthcare expenditures are high because of the specialized and complex treatment needed as well as the presence of multiple comorbidities. This study aims to describe and assess the effect of comorbidities on healthcare expenditures (direct medical cost and non-medical costs including transportation and compensatory allowances) for patients with ESKD in France while considering the modality and duration of renal replacement therapy (RRT). This study included adults who started RRT for the first time between 2012 and 2014 in France and were followed for 5 years. Generalized linear models were built to predict mean monthly cost (MMC) by integrating first the time duration in the cohort, then patient characteristics and finally the duration of use of each treatment modalities. Comorbidities with the highest effect on MMC were inability to walk (+ 1435€), active cancer (+ 593€), HIV positivity (+ 507€) and diabetes (+ 396€). These effects vary according to age or treatment modalities. This study confirms the importance of considering patient characteristics, comorbidities and type of RRT when assessing healthcare expenditures for patients with ESKD.

Lupus activity and outcomes in lupus patients undergoing maintenance dialysis.

OBJECTIVES: Lupus activity has long been considered to decline after initiation of maintenance dialysis (MD). This assumption is based on limited historical data. We aimed to describe the natural history of lupus in patients undergoing MD. METHODS: We assembled a national retrospective cohort of lupus patients who started dialysis between 2008 and 2011, included in the REIN registry with a 5-year follow-up. We analysed healthcare consumption from the National Health Data System. We evaluated the proportion of patients 'off-treatment' (i.e. receiving 0-5 mg/d of corticosteroids, without any immunosuppressive therapy) after the start of MD. We describe the cumulative incidences of non-severe and severe lupus flares, cardiovascular events, severe infections, kidney transplantation and survival. RESULTS: We included 137 patients (121 females and 16 males), with a median age of 42 years. The proportion of patients 'off-treatment' at dialysis initiation was 67.7% (95% CI: 61.8, 73.8%), and increased to 76.0% (95% CI: 73.3, 78.8) at 1 year and 83.4% (95% CI: 81.0, 85.9%) at 3 years, with a lower proportion in younger patients. Lupus flares mainly occurred in the first year after MD initiation, and at 12 months 51.6% of patients had presented a non-severe lupus flare and 11.6% a severe lupus flare. In addition, 42.2% (95% CI: 32.9, 50.3%) and 23.7% (95% CI: 16.0, 30.7%) of patients at 12 months had been hospitalized for cardiovascular events or infections, respectively. CONCLUSION: The proportion of lupus patients off-treatment increases after MD initiation, but non-severe and severe lupus flares continue to occur, mainly during the first year. This calls for the continued follow-up of lupus patients by lupus specialists after dialysis initiation.

Evolution of HLA-sensitization according to immunosuppressive therapy management among kidney transplant patients returning to dialysis between 2008 and 2019: A French retrospective study.

BACKGROUND: The optimal management of immunosuppressive therapy (IT) after kidney allograft failure (KAF) remains controversial. Although maintaining IT may reduce HLA-sensitization and improve access to retransplantation, it may also increase the rate of immunosuppression-related complications. The overall impact on patient mortality is unknown. The main objective of this study was to compare the evolution of HLA-sensitization 6 months after KAF according to IT management. METHODS: Individual clinical and health care data were extracted from the French national end-stage kidney disease registry (Renal Epidemiology and Information Network [REIN]) and the French National Health Data system (SNDS), respectively. Patients aged > 18 years returning to dialysis after KAF between January 2008 and December 2019 in Lorraine were included. Patients were classified into two groups, IT continuation or IT discontinuation. HLA-sensitization was defined as an increase in incompatible graft rate (IGR) between KAF and 6 months post-KAF (change to a higher predefined category (0%-5%), (5%-20%), (20%-50%), (50%-85%), (85%-95%), (95%-98%), (98%-100%)). Secondary outcome was patient survival according to IT management. RESULTS: A total of 121 patients were included, 35 (29%) of whom continued IT. HLA-sensitization after KAF tended to be higher in the "IT discontinuation" group (57% vs. 38% in the "IT continuation" group, p = .07). In multivariate analysis, IT continuation was associated with a lower increase in IGR (OR .37, 95% CI [.14; .93]). IT management was not associated with patient mortality. CONCLUSIONS: Continuation of IT after KAF was associated with less change in IGR and was not associated with excess mortality.

Arteriovenous access creation and hazards of hospitalization and death in patients starting hemodialysis.

BACKGROUND: Recent evidence suggests overestimation of benefits associated with arteriovenous (AV) fistula versus graft in certain populations. We assessed hazards of all-cause and cause-specific hospitalization and death associated with AV access type in patients who started hemodialysis with a catheter in France, overall and by subgroups of age, sex, and comorbidities. METHODS: From the REIN Registry, we included patients who initiated hemodialysis with a catheter from 2010 through 2018, and identified first-created fistula or graft through the French national health-administrative database. We used joint frailty models to deal with recurrent hospitalizations and potential informative censoring by death, and inverse probability weighting to account for confounding. RESULTS: From the 18 800 patients included (mean age 68 ± 15 years, 35% women), 5% underwent AV graft creation first. Weighted hazard ratio (wHR) of all-cause hospitalization associated with graft was 1.08 (95% CI 1.02 to 1.15), that of vascular access-related hospitalization was 1.43 (95% CI 1.32 to 1.55), and those of cardiovascular- and infection-related hospitalizations were 1.14 (95% CI 1.03 to 1.26) and 1.11 (95% CI 0.97 to 1.28), respectively. Results were consistent for most subgroups, except that the highest hazard of all-cause, cardiovascular-, and infection- related hospitalizations with graft was blunted in patients with comorbidities (i.e. diabetes, wHR 1.01, 95% CI 0.93 -1.10; 1.10, 95% CI 0.96 to 1.26; and 0.94, 95% CI 0.78 to 1.12, respectively). CONCLUSIONS: In patients starting hemodialysis with a catheter, AV graft creation is associated with increased hazard of vascular access-related hospitalizations compared to fistula. This may not be the case for death or other causes of hospitalization.

Cross-validation of comorbidity items in two national databases in a sample of patients with end-stage kidney disease.

BACKGROUND: The use of national medico-administrative databases for epidemiological studies has increased in the last decades. In France, the Healthcare Expenditures and Conditions Mapping (HECM) algorithm has been developed to analyse and monitor the morbidity and economic burden of 58 diseases. We aimed to assess the performance of the HECM in identifying different conditions in patients with end-stage kidney disease (ESKD) using data from the REIN registry (the French National Registry for patients with ESKD). METHODS: We included all patients over 18 years of age who started renal replacement therapy in France in 2018. Five conditions with a similar definition in both databases were included (ESKD, diabetes, human immunodeficiency virus [HIV], coronary insufficiency, and cancer). The performance of each SNDS algorithm was assessed using sensitivity, specificity, positive predictive values (PPVs), negative predictive values (NPVs), and Cohen's kappa coefficient. RESULTS: In total 5,971 patients were included. Among them, 81% were identified as having ESKD in both databases. Diabetes was the condition with the best performance, with a sensitivity, specificity, PPV, NPV, and Kappa coefficient all over 80%. Cancer had the lowest level of agreement with a Kappa coefficient of 51% and a high specificity and high NPV (94% and 95%). The conditions for which the definition in the HECM included disease-specific medications performed better in our study. CONCLUSION: The HECM showed good to very good concordance with the REIN database information overall, with the exception of cancer. Further validation of the HECM tool in other populations should be performed.

Loop diuretics improve conditions of dialysis inception in advanced CKD: an observational cohort study.

BACKGROUND: Diuretics can reduce fluid overload but their effects on conditions of dialysis start remain elusive. We aimed to determine whether loop diuretics exposure in the year before inception can delay the need for dialysis, affect the conditions of dialysis start, and cause early mortality three months after initiation in pre-dialysis patients. METHODS: All adult patients starting dialysis from 2009 to 2015 in the REIN registry were included. Three subgroups were defined according to diuretics exposure: "continuous", "stopped", or "no diuretics" over the year before inception and compared for pre-dialysis hospitalization rates, and 3-month mortality after dialysis. RESULTS: Among 59,302 patients, we found fewer emergency initiations of dialysis in the continuous diuretics group than in the stopped diuretics and no diuretics groups: 9492 (27.5%) vs 1905 (32.3%) and 5226 (35.0%), respectively; p < 0.0001. In the continuous diuretics group, there were fewer starts on central venous catheters than in the stopped diuretics and no diuretics groups: 16,677 (49.4%) vs. 3246 (56.0%) vs. 8,639 (58.4%); p < 0.0001. Patients with continuous diuretic exposure had a lower hospitalization rate than the stopped diuretics group in the year prior to dialysis, except for heart failure. The unadjusted 3-month hazard ratio of mortality after dialysis inception was significantly higher in the "no diuretics" or "stopped diuretics" groups compared with "continuous diuretics", but the excess of risk was blunted after adjustment for emergency start and pre-dialysis visits to a nephrologist. CONCLUSION: Continuous loop diuretics exposure in the year before dialysis was associated with better conditions of dialysis inception, and possibly lower mortality rates in the three months after inception.

Care trajectory differences in women and men with end-stage renal disease after dialysis initiation.

Few studies investigated sex-related differences in care consumption after dialysis initiation. Therefore, the aim of this study was to compare the care trajectory in the first year after dialysis start between men and women by taking into account the context of dialysis initiation. All patients who started dialysis in France in 2015 were included. Clinical data of patients and context of dialysis initiation were extracted from the Renal Epidemiology and Information Network (REIN) registry. Data on care consumption in the first year after dialysis start came from the French national health data system (SNDS): hospital stays <24h, hospital stays to prepare or maintain vascular access, hospital stays >24h for kidney problems and hospital stays >24h for other problems, and consultations with a general practitioner. Variables were compared between men and women with the χ2 test and Student's or Welch t-test and logistic regression models were used to identify the factors associated with care consumption after dialysis start. The analysis concerned 8,856 patients (36% of women). Men were less likely to have a hospital stays >24h for kidney problems than women (OR = 0.8, 95% CI = [0.7-0.9]) and less general practitioner consultations (OR = 0.8, 95% CI = [0.8-0.9]), in the year after dialysis initiation, after adjustment on patient's characteristics. Moreover, hospital stays for vascular access preparation or maintenance were longer in women than men (median duration: 2 days [0-2] vs. 1 day [0-2], p < 0.001). In conclusion, despite greater comorbidities in men, this study found few differences in post-dialysis care trajectory between men and women.

Social deprivation and kidney failure due to an undiagnosed nephropathy.

BACKGROUND: In France, kidney diseases of undetermined origin account for 5%-20% of all causes of end-stage kidney disease. We investigated the impact of social disadvantage on the lack of aetiological diagnosis of nephropathies. METHODS: Data from patients who started dialysis in France between 1 January 2017 and 30 June 2018 were extracted from the French Renal Epidemiology and Information Network registry. The social deprivation of each individual was estimated by the European Deprivation Index (EDI) defined by the patient's address. Logistic regression was used to perform mediation analysis to study the potential association between social deprivation and unknown nephropathy. RESULTS: Of the 7218 patients included, 1263 (17.5%) had unknown kidney disease. A total of 394 (31.4%) patients in the unknown kidney disease belonged to the most deprived quintile of the EDI [fifth quintile (Q5)], vs 1636 (27.5%) patients in the known kidney disease group. In the multivariate analysis, unknown kidney disease was associated with Q5 (odds ratio 1.40, 95% confidence interval 1.12-1.74, P = .003). Mediation analysis did not identify any variables (e.g. obesity, initiation of dialysis in emergency, number of visits to the general practitioner and nephrologist before initiation of dialysis, date of first nephrology consultation) that mediated the association between social deprivation and nephropathy of unknown origin. CONCLUSIONS: Our results show that, compared with nondeprived subjects, individuals experiencing social deprivation have a higher risk of unknown nephropathy at dialysis initiation. However, mediation analysis did not identify any variables that explained the association between social deprivation and nephropathy of unknown origin.

Health care provision / Offre de soins

On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the French national ESKD register was carried out. On the issue of healthcare provision, the following key messages were retained. France offers diversified, local healthcare that adapts to the patients' needs with several additional players (public, university, lucrative private, solidarity private). However, the spatial distribution of this offer shows differences between territories as regards the distribution of the different treatment modalities. For several years now, the REIN proposes a new way of representing the provision of care using groups of establishments working together, a granularity that seems more suited to the evaluation of practices than isolated dialysis units.

À l'occasion des 20 ans du REIN (Réseau Épidémiologie et Information en Néphrologie), un travail de synthèse sur les apports du registre a été mené. Sur la question de l'offre de soins, les messages clés suivants ont été retenus. La France dispose d'une offre de soins diversifiée, de proximité, qui s'adapte aux besoins des patients avec plusieurs acteurs complémentaires (public, universitaire, privé lucratif, privé solidaire). La répartition spatiale de l'offre montre cependant des différences entre les territoires en ce qui concerne la répartition des différentes modalités de traitement. Depuis plusieurs années, le REIN propose un nouveau mode de représentation de l'offre de soins à partir de regroupements d'établissements travaillant en filière, granularité qui semble plus adaptée à l'évaluation des pratiques que l'échelon unité de dialyse.

Incidence of End Stage Kidney Disease and context of dialysis initiation / Incidence de la maladie rénale chronique stade 5 traitée par suppléance et contexte d'initiation de la dialyse

On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the national French ESKD register was carried out. On the issue of ESKD incidence, the following key messages were retained. Thanks to several studies conducted using data from the REIN registry, the spatial variations of incidence of stage 5 chronic kidney disease in the replacement stage could be explained, in part, by the health condition of the general population as well as by the socio-economic context and differences in practices. Just like what is observed in other countries, the incidence is stabilising, or even decreasing, especially among people who do not have diabetes. Thanks to the registry having provided an indicator on the initiation of the dialysis, a decrease in the rate of initiation of emergency dialysis (i.e., initiated less than 24 hours after a nephrology evaluation considering a vital risk for the patient) has been observed, resulting from an effort to understand and better anticipate the starting of the replacement.

À l'occasion des 20 ans du REIN (Réseau Epidémiologie et Information en Néphrologie), un travail de synthèse sur les apports du registre a été mené. Sur la question de l'incidence de la maladie rénale chronique stade 5, les messages clés suivants ont été retenus. Grâce à plusieurs études menées à partir des données du registre REIN, les variations spatiales d'incidence de la maladie rénale chronique stade 5 au stade de la suppléance ont pu être expliquées, en partie, par l'état de santé de la population générale mais aussi par le contexte socioéconomique et des différences de pratiques. À l'image de ce qui est observé dans d'autres pays, l'incidence est en voie de stabilisation, voire à la baisse, en particulier chez les personnes non diabétiques. Grâce à la mise à disposition par le registre d'un indicateur sur l'initiation de la dialyse, on observe une diminution du taux d'initiation de la dialyse en urgence (c'est-à-dire initiée moins de 24 heures après une évaluation néphrologique considérant un risque vital pour le patient) résultant d'un effort pour comprendre et mieux anticiper le démarrage de la suppléance. L'initiation de la dialyse sur cathéter, autre indicateur de la prise en charge, n'a pour l'instant pas diminué mais avec la mise en place du forfait MRC en octobre 2019 et à distance de la pandémie, la préparation à l'épuration extrarénale devrait être mieux anticipée.

Treatment trajectories of patients with End Stage Kidney Disease / Trajectoires des patients en suppléance

On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the national French ESKD register was carried out. On the issue of trajectory of ESKD patients, the following key messages were retained. Apart from a few rare, absolute or relative contraindications, till date, there is no medical consensus on the indications of one treatment modality as compared to another, and therefore, no recommendations allowing defining criteria for guiding patients, based on their characteristics, to a technique/treatment modality. In addition, the patients' choices and their changing needs over time must be taken into account. Thus, due to the limitations of each of these modalities, a good number of patients with stage 5 renal failure treated with kidney replacement therapy will move between these different modalities. For many years, the REIN registry has endeavoured to represent the patient flows between the different treatment modalities. In order to better understand and then optimise the trajectories followed by patients who have reached stage 5 of their chronic renal failure, it was necessary to develop tools to model these complex trajectories where the treatment modalities are considered as complementary.

À l'occasion des 20 ans du REIN (Réseau Epidémiologie et Information en Néphrologie), un travail de synthèse sur les apports du registre a été mené. Sur la question de la trajectoire des patients avec une maladie rénale stade 5, les messages clés suivants ont été retenus. En dehors de quelques rares contre-indications absolues ou relatives, à ce jour, il n'existe pas de consensus médical sur les indications d'une modalité de traitement par rapport à une autre, et par conséquent, de recommandations permettant de définir des critères d'orientation des patients en fonction de leurs caractéristiques vers une technique/modalité de traitement. Par ailleurs, les choix des patients et l'évolution de leurs besoins au cours du temps doivent être pris en compte. Ainsi, du fait des limites de chacune de ces modalités, un bon nombre de patients en insuffisance rénale stade 5 traités par suppléance rénale vont transiter entre ces différentes modalités. Depuis de nombreuses années, le registre REIN s'est attaché à représenter les flux de patients entre les différentes modalités de traitement. Afin de mieux connaître puis d'optimiser les trajectoires suivies par les patients arrivés au stade 5 de leur insuffisance rénale chronique, il a été nécessaire de mettre au point des outils permettant de modéliser ces trajectoires complexes où les modalités de traitement sont considérées comme complémentaires.

Survival of patients with End Stage Kidney Disease / Mortalité des patients avec une maladie rénale chronique stade 5 traités par suppléance

On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the national French ESKD register was carried out. On the issue of survival of ESKD patients, the following key messages were retained. The annual mortality rates of ESKD patients are relatively stable even though patients are ageing and increasingly have diabetes or obesity. These changes are probably linked to improved practices. Cardiovascular diseases and infections are the main causes of death. The year 2020 was marked by an increase in mortality due to the SARS-CoV-19 infection that was particularly severe in these patients.

À l'occasion des 20 ans du REIN (Réseau Epidémiologie et Information en Néphrologie), un travail de synthèse sur les apports du registre a été mené. Sur la question de la survie des patients avec une maladie rénale stade 5, les messages clés suivants ont été retenus. Les taux de mortalité annuels des patients en IRCT sont relativement stables alors même que les patients vieillissent et qu'ils sont de plus en plus souvent porteurs d'un diabète ou d'une obésité. Ces évolutions sont probablement en lien avec une amélioration des pratiques. Les maladies cardiovasculaires et les infections représentent les causes principales de décès. L'année 2020 a été marquée par une augmentation de la mortalité en raison de l'infection à SARS-CoV-19 particulièrement sévère chez ces patients.

REIN: a tool at the service of the patients / REIN : un outil au service des patients

On the occasion of the 20th anniversary of the REIN (French Renal Epidemiology and Information Network), a summary work on the contributions of the national French ESKD register was carried out. On the issue of patients' perspectives, the following key messages were retained. As shown by the SONG (Standardised Outcomes in Nephrology) initiative, the criteria for judging the dialysis treatment that patients and care-givers prefer are not those that are traditionally found in published studies. For example, for haemodialysis, they are fatigue, ability to travel, time without dialysis, impact on family and ability to work. The concern to give the patients a voice has been at the heart of the REIN registry right from the outset. In addition, there are patient representatives in the REIN Scientific Council and the Steering Group. Although mainly focused on quantitative health data collected from professionals, REIN has also supported studies pertaining to data collected directly from patients. These studies enable addressing questions pertaining to the problems faced by patients in their care pathway and their life with the disease. The setting up of a tool for routine and electronic collection of the patients' point of view in the evaluation of their treatment and the support of patient-initiated research contribute to positioning the REIN as a partner tool at the service of patients, unique in France.

À l'occasion des 20 ans du REIN (Réseau Épidémiologie et Information en Néphrologie), un travail de synthèse sur les apports du registre a été mené. Sur le point de vue des patients avec une maladie rénale stade 5, les messages clés suivants ont été retenus. L'initiative SONG (Standardised Outcomes in Nephrology) l'a montré, les critères de jugement de la prise en charge en dialyse que les patients et aidants privilégient ne sont pas ceux que l'on retrouve traditionnellement dans les études publiées. Par exemple, en hémodialyse, il s'agit de : la fatigue, la capacité à voyager, le temps sans dialyse, l'impact sur la famille et la capacité à travailler. La préoccupation de donner la parole aux patients a d'emblée été au coeur du registre REIN. En outre, des représentants de patients siègent au conseil scientifique REIN et au sein du groupe de pilotage. Bien qu'essentiellement orienté sur des données de santé quantitatives recueillies auprès des professionnels, REIN a également soutenu les études portant sur des données recueillies directement auprès des patients. Ces études permettent d'aborder des questions proches des problématiques des patients sur leurs parcours de soins et leur vie avec la maladie. La mise en place d'un outil de recueil électronique et de routine du point de vue des patients dans l'évaluation de leur prise en charge et le soutien de recherches à l'initiative des patients participent à positionner le REIN comme outil partenaire au service des patients, unique en France.