1. Finnish Registry of Kidney Disease, FRKD Quality Registries Meeting Stockholm, December 8th-9th, 2014 presented by: Carola Grönhagen-Riska (chair of the board) in collaboration with: Patrik Finne (leading physician)

2. Finnish Registry of Kidney Disease, FRKD  One of many national registries (our coverage ca. 97-99%)  One of a few registries supported by the Finnish government  Administered by the National Kidney Patient Association in cooperation with University hospital nephrologists and the Finnish Society of Nephrologists  Origin through co-operation with the pan-European EDTA-ERA registry  Documentation of Renal Replacement Therapies (RRT) of patients with End Stage Renal Disease (ESRD) since 1964

3. ESRD – RRT - Registries ESRD leads to death or RRT, which is among the most demanding and expensive types of chronic therapies encompassing :  Dialysis (variations of hemodialysis or peritoneal dialysis)  QoL of patients restricted  Long term prognosis lower than in healthy persons due to primary disease, cardiovascular, infectious and other treatment complications  costs ca. 30000 – 50000 euros/year/patient AND/OR  Transplantation from a living or dead donor  QaL usually better  Shortage of donors precludes optimal prognosis (”no waste of organs” from living or dead donors)  Prognosis better (selected patient population), much improved immunosuppression  costs usually much lower compared with dialysis, particularly after the second year RRT is driven by prognostic factors and resources  Registration born out of specialty based self-detected needs

4. FRKD, data collection Patient consent Person specific basic data, demographics Cause of kidney disease and comorbidity data at entry of RRT Choice of RRT treatment at entry and all its changes and dates Basic treatment associated data once per year Basic laboratory data once per year Death and its cause Finnish population data by region and as a whole Co-operation with other Finnish and International registries

5. South Western (0.72 mill.) Western (1.23 mill.) Southern (1.82 mill.) Eastern (0.84 mill.) Northern (0.73 mill.) Renal replacement therapy (RRT) in Finland: 21 health care districts and five University hospital areas

6. RRT-registries – a global network

7. The process; examples ”Acceptance” (Incidence) rate for RRT Choice of dialysis mode Prevalence of RRT Choice of access Dialysis dose Transplant policy and availability Blood pressure levels Laboratory values Use of drugs Mortality Graft function Peritonitis Other infections Hospitalizations QoL Employment Costs of care Results; hard and softer Variables of standard of care in RRT

8. Finnish Registry of Kidney Disease, FRKD  INCIDENCE  PREVALENCE  MORTALITY  LABORATORY  Tx POLICY

9. Incidence of RRT in 1965-2011 Great changes over time, FRKD > 75 v 65-74 v 45-64 v 20-44 v Incidence per million inhabitants Year

10. Incidence of RRT by region, FRKD, 2013 Incidence/million inhabitants, age and sex adjusted Northern Western Whole country South Western Eastern Southern

11. Incidence of RRT in different diagnosis groups over time 1965-2013, FRKD Type II diabetes Type I diabetes Polycystic kidney degeneration Amyloidosis, mostly secondary to rheumatoid arthritis

12. 1980-99 1975-79 1970-74 1965-69 0 1 2 3 4 5 6 7 8 9 10 05 152025303540 Years from diagnosis of type 1 diabetes Incidence rate of ESRD (cases/1000 patient-years) Finne et al, JAMA 2005 Decreasing rate of RRT among type I diabetics in Finland

13. Incidence of RRT in different countries

14. Incidence of RRT in 1965-2011 Great changes over time, FRKD > 75 v 65-74 v 45-64 v 20-44 v Incidence per million inhabitants Year

15. Incidence of RRT per age group in the Nordic countries Incidence per million (age-related) population

16. Incidence of RRT in the age group 75+ Incidence per million (age-related) population ERA-EDTA Registry Annual Report 2011

17. Conclusions 1, FRKD  Incidence of RRT is fairly equally distributed among different regions  This century incidence has decreased.  This is also the trend among type I and type II diabetics, in spite of an increasing background population  The international difference in incidence seems concentrated to patients > 75 years  This phenomenon needs further studies

18. Finnish Registry of Kidney Disease, FRKD  INCIDENCE  PREVALENCE  MORTALITY  LABORATORY  Tx POLICY

19. Prevalence of RRT by treatment group, FRKD, 2013 In-center HD Home HD APD CAPD Kidney transplanted Prevalence/million inhabitants

20. Prevalence of RRT by region, FRKD, 2013 Prevalence/million inhabitats, age and sex adjusted South Western Southern Whole country Western Eastern Northern

21. Prevalence of RRT in different parts of the world

22. Calculated survival Age Expected survival (years) Annual Report 2010 General population Kidney transplant patients Dialysis patients

23. Mortality in RRT by region, FRKD, 2013 Mortality/1000 patient years, age and sex adjusted Northern Eastern Western Whole country South Western Southern

24. 012345678910 0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9 1 PCKD DM1 DM2 Amyloidosis Years after RRT start Probability of survival, adjusted for age and sex Probability of survival by diagnosis, FRKD

25. Conclusions 2, FRKD  Prevalence of RRT is fairly equally distributed among different regions  Prevalence has steadily increased due to improved survival  Mortality has decreased in all regions with some differences  International RRT mortality data are difficult to compare due to differences in background population and in distribution of diagnoses and mode of therapy (dialysis versus Tx)  How about a ”prevalence:incidence” ratio = ”yield”/ ”result” of administered RRT” ?

26. International ratio of prevalence/incidence, FRKD Report 2009

27. Finnish Registry of Kidney Disease, FRKD  INCIDENCE  PREVALENCE  MORTALITY  LABORATORY  Tx POLICY

28. Can we change prognosis? Adherence to guidelines Blood pressure albumin hemoglobin urea CRP phosphorus ionized Ca PTH lipids Glucose balance

29. Distribution of hemoglobin values by hospital district, FRKD 2011 4020 Hb < 100 20406080100 Proportion of dialysis patients (%) Hb 100-119Hb > 120 0 Country Missing values: 6/1774=0,3 %

30. Laboratory values and survival on dialysis, FRKD Marker Albumin Hb CRP Phosphorus Cholesterol Creatinine Ionized calcium Urea *Adjusted for age and sex Association with death P-value* <0.001 0.012 0.046 0.076 0.347 0.528

31. Cholesterol and risk of death among dialysis patients Cholesterol (mmol/l) < 3 3-3,9 4-4,9 5-5,9 > 6 1)Adjusted for age and sex 2)Adjusted for age and sex, albumin and creatinine n 270 543 449 183 84 RR 1) 1 0,77 0,72 0,76 0,51 RR 2) 1 0,96 0,83 0,46

32. Conclusions 3, FRKD  Undernourishment, anemia, on-going (vasculatory?) inflammation and high phosphorus predict worse prognosis  Cholesterol is a fickle variable in RRT - On one hand high values may indicate normal nutrition (good prognosis) and vice versa - On the other hand might indicate cardiovascular risk, but not in the same way as in the general population - The issue is open  We have not detected great regional differences in adherence to guidelines, but repeated controls serve ”corrective measures”

33. Finnish Registry of Kidney Disease, FRKD  INCIDENCE  PREVALENCE  MORTALITY  LABORATORY  Tx POLICY

34. Different kidney transplant policy Where are the living donors?

35. No. of kidney donors/1 mill. population Living / deceased donors

36. Time on dialysis before first kidney Tx Year of first kidney transplantation Time on dialysis, years 50 % (median) 75 % 25 %

37. Helanterä et al, Transplantation 2014 Association between time on dialysis and patient survival after Tx 2000-2010 Probability of survival 0-11 mo. 12-23 mo. 24-35 mo. 36-59 mo. >60 mo. Adjusted for: -Age -Sex -Kidney diagnosis -Donor status -Mode of dialysis -Mycophenolate -S-Alb before Tx No = 1638

38. 1 2 3 4 5 Risk ratio 0-1112-2324-3536-59> 60 Months on dialysis Time on dialysis and risk of death after Tx 2000-2010 Helanterä et al, Transplantation 2014

39. Conclusions 4, FRKD  Hardly any living donors  Great regional differences in organ retrieval (not shown)  Retrieval of dead donor organs could be improved  Long waiting time on dialysis increases mortality after Tx  Over the last years Much National and Registry activity to achieve change: THIS YEAR OVER 20 PER CENT INCREASE in No. of KIDNEY TRANPLANTS !!!

40. When do registries serve quality aspects?  When they contain personal data on health care problems, their solutions and results  When they enable regional, national and international comparisons  Document and analyze adherence to international guidelines  When data and analyses lead to continual improvement of QoC  When registries analyze the efficacy of given care  When they enable the identification of best care and how it is to be delivered WE FEEL WE DO ! Thank You, FRKD