3/5/18. Background. Registry Reports. Dialysis Registry Update and Future Directions
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1 Dialysis Registry Update and Future Directions Annabelle N. Chua, MD March 4, 2018 Background Founded in 1987 as a transplant registry Expanded registry to include dialysis (1992) and CKD (1994) Patient data collected every 6 months Information on nearly 20,000 children from over 100 institutions (almost 8000 on dialysis) Enrolled more than 2,000 children in clinical trials Developed benchmarking tools for CKD and ESRD care Registry Reports Data source for care practices and outcomes in children with chronic kidney disease/esrd Universally cited in presentations of clinical practices and/or outcomes in pediatric dialysis and transplantation Google citation NAPRTCS Annual Report cited 4990 times NAPRTCS website cited an additional 1440 times 1
2 Registries- Value Access to data for special studies 156 publications with 170 different authors Articles with NAPRTCS in title cited 2843 times Provide data and infrastructure to support prospective studies CKiD, RiVUR, SCOPE Launched in 2009 Benchmarking Data Provides center specific outcomes for 3 patient populations CKD, Dialysis, Transplant Data used for: QAPI Support Center of Excellence status with 3 rd party payers Identify areas of deficiency to justify additional resources 25 centers participating for 2018 How is NAPRTCS different than other sources of benchmark data? Includes data on children up to 21 yrs Data only collected from pediatric centers Pediatric specific outcomes Ex. growth, school Data on incident population vs. prevalent population Benchmarks at 30 days, 6m, 1 yr, 2 yr Allows comparison of patients of same vintage 2
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5 Benchmarks in the works % on hemodialysis with central line, fistula, graft at each of the follow up time points % on DD transplant list, in evaluation or with potential living donor at each of the follow up time points % with influenza vaccine during last season % with appropriate vaccination against S. Pneumonia % with documented Hepatitis B sab in last 12 months Prospective Trials 8 NIH funded prospective trials 22 Industry sponsored studies Clinical trials have enrolled more than 2000 children from over 80 centers SELECTED DIALYSIS REGISTRY RESULTS 5
6 Pediatr Nephrol (2017) 32: Growth on Dialysis by Age and Modality Growth Hormone Therapy 6
7 Immunization data days 6 months 12 months 18 months Yes Flu No Flu Yes Pneumovax No Pneumovax Dialysis Modality at Initiation There has been a trend away from PD as the initial dialysis modality in the registry. Initial Hemodialysis Access Type by Initiation Year 7
8 Percent 3/5/18 PD Catheter Access Type by Initiation Year Tenckoff Straight Tenkhoff Curled Toronto Western Presternal Other Initiation Year PD Modalities Over Time 1 Month 6 Month 12 Month 24 Month Total Registry Total Courses Modality CAPD APD IPD Missing/Unknown N % N % N % N % Although APD is the predominant PD modality, CAPD is prescribed in a significant percentage of children Characteristics of Peritonitis Episodes N of episodes Years of FU Expected Months Annualized Rates between infections Rate 95% Cl Months 95% Cl Total ( ) 20.3 ( ) Age 0-1 years ) 16.8 ( ) 2-5 years ( ) 19.6 ( ) 6-12 years ( ) 20.8 ( ) >12 years ( ) 22.6 ( ) 8
9 Peritonitis and Catheter Characteristics N of episodes Years of FU Expected Months Annualized Rates between infections Rate 95% Cl Months 95% Cl Total ( ) 20.3 ( ) Catheter Straight ( ) 17.3 ( ) Curled ( ) 20.1 ( ) Presternal ( ) 22.5 ( ) Cuff One ( ) 17.1 ( ) Two ( ) 23.4 ( ) Tunnel Swan Necked/Curved ( ) 26.2 ( ) Straight ( ) 16.8 ( ) Exit Site Orientation Up ( ) 14.8 ( ) Down ( ) 23.7 ( ) Lateral ( ) 17.4 ( ) NAPRTCS, 2017 Time to First Peritonitis Infection by Peritoneal Dialysis Access Characteristics Characteristics of Peritonitis Episodes Age 0-1 Year at Dialysis Initiation N of episodes Years of FU Expected Months Annualized Rates between infections Rate 95% Cl Months 95% Cl Age 0-1 years ( ) 16.8 ( ) Catheter Straight ( ) 13.8 ( ) Curled ( ) 16.4 ( ) Presternal ( ) 17.4 ( ) Cuff One ( ) 13.8 ( ) Two ( ) 20.7 ( ) 9
10 Characteristics of Peritonitis Episodes Age 0-1 Year at Dialysis Initiation N of episodes Years of FU Expected Months Annualized Rates between infections Rate 95% Cl Months 95% Cl Total ( ) 16.8 ( ) Tunnel Swan necked/curved ( ) 21.9 ( Straight ( ) 13.4 ( ) Exit Site Orientation Up ( ) 11.1 ( ) Down ( ) 17.4 ( ) Lateral ( ) 15.9 ( ) Year of Dialysis Initiation ( ) 11.6 ( ) ( ) 18.0 ( ) ( ) 28.5 ( ) ( ) 28.9 ( ) Frequency of Peritonitis Episodes by Era N of episodes Years of FU Expected Months Annualized Rates between infections Rate 95% Cl Months 95% Cl Total ( ) 20.3 ( ) Year of Dialysis Initiation ( ) 15.4 ( ) ( ) 21.7 ( ) ( ) 33.1 ( ) ( ) 42.2 ( ) Patient Survival by Era 12 Months 24 Months 36 Months Year of Dialysis Initiation N % Survival SE % Survival SE % Survival SE
11 Survival on Dialysis by Age The very youngest children have the worst survival, with most of this difference seen in the first year of dialysis. SPECIAL STUDIES Survival During Initial Course of Peritoneal Dialysis Carey WA, et al. Pediatrics
12 Overall Survival of Infant PD Patients Carey WA, et al. Pediatrics 2015 Multivariate Cox Regression Model for Overall Survival Baseline Factor Comparison group Reference group Hazard ratio 95% CI p-value Era of dialysis initiation to Age 0-31 days 1-12 months to Sex Female Male to Race (overall p=0.8076) Black Hispanic Other White to to to Primary Disease status (overall p=0.0006) A/hypo/dysplastic Congenital nephrotic Polycystic disease Other/Unknown Obstructive Uropathy to to to to < Carey WA, et al. Pediatrics 2015 Effect of Hgb target < 11.5 gm/dl on Pediatric Dosing ESA use Twichell, et al Adult erythropoietin dosing guidelines implemented in 2008 Mean erythropoietin dosing 6 months after starting: 211 u/kg/week (baseline) vs. 131 u/kg/week (implementation) vs 142 u/kg/week (post-implementation 12
13 Effect of Hgb target < 11.5 gm/dl on Pediatric Dosing Anemia Rates Twichell, et al Effect of Hgb target < 11.5 gm/dl on Pediatric Dosing Transfusion rates Twichell, et al Registries-Future Create a Registry that is relevant, accessible, nimble, and adaptable Update data elements to reflect current practice Develop sustainable model for the registry including special studies and analyses Reduce barriers to data entry Provide real-time access to data for clinical care, Benchmarking and research 13
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17 Conclusion NAPRTCS continues to be source of information that allows for trending practices over time Allows for deep dive into practice outcomes over time Benchmarking is a tool that can help individual centers compare results to their peers Goal is to continue to evolve and provide more relevant and meaningful information for both research and clinical practice as well as to make the data more accessible General Demographics N % All Dialysis Patients Gender Male Female Missing Race/Ethnicity White Black Hispanic Other Age Grouping 0-1 years years years years >18 years Missing 1 <0.1 General Demographics All Dialysis Patients N % Primary Diagnosis FSGS A/hypo/dysplastic kidney Obstructive uropathy Reflux nephropathy SLE nephritis Polycystic disease HUS Chronic GN Congenital nephrotic syndrome Prune Belly Medullary cystic disease
18 Time to First Peritonitis Infection Dialysis Initiation % with Peritonitis Months from Dialysis Initiation Time to First Peritonitis Infection by Age Dialysis Initiation AGE 100 % with Peritonitis years 2-5 years 6-12 years >12 years Months from Dialysis Initiation Frequency (%) of Erythropoietin Use at 6 Months Dialysis Initiation Peritoneal Dialysis Age (years) at Index Initiation Hemodialysis Age (years) at Index Initiation EPO frequency > >12 Daily Three times/week Two times/week Weekly <Weekly
19 Erythropoietin Type by Modality Dialysis Initiation PD HD EPO Frequency N Percent N Percent Epogen Procrit Aranesp Other Unknown Total Hematocrit Level at 30 Days by Erythropoietin Frequency Dialysis Initiation EPO Frequency Peritoneal Dialysis Hematocrit (%) at 30 Days N Mean SE Median Daily Three times/week Two times/week Weekly < Weekly Hematocrit Level at 30 Days by Erythropoietin Frequency Dialysis Initiation EPO Frequency Hemodialysis Hematocrit (%) at 30 Days N Mean SE Median Daily Three times/week Two times/week Weekly < Weekly
20 Growth and Enteral Nutrition Mean Height Z Score Dialysis Initiation >12 Age Clinical Trials Reduce barriers and increase incentive for participation Increase member participation in the development and implementation of clinical trials Focus on junior faculty and fellows Encourage submission of investigator-initiated trials 20
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Growth van Stralen KJ, et al., Kidney Int, 2014 Blood Pressure Management van Stralen KJ, et al., Kidney Int, 2014 Sodium Losses on PD Infants might need higher UF rate per BSA as compared to adults to
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