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)

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

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

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

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

RRT-registries – a global network

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

Finnish Registry of Kidney Disease, FRKD

INCIDENCE

PREVALENCE

MORTALITY

LABORATORY

Tx POLICY

Incidence of RRT in 1965-2011Great changes over time, FRKD

19651967

19691971

19731975

19771979

19811983

19851987

19891991

19931995

19971999

20012003

20052007

20092011

0

10

20

30

40

50

60

70

80

90

100

> 75 v

65-74 v

45-64 v

20-44 v

Incidence per million inhabitants

Year

Incidence of RRT by region, FRKD, 2013

Incidence/million inhabitants, age and sex adjusted

NorthernWesternWhole countrySouth Western EasternSouthern

Incidence of RRT in different diagnosis groups over time 1965-2013, FRKD

Type II diabetes

Type I diabetes

Polycystic kidneydegeneration

Amyloidosis, mostlysecondary to rheumatoid arthritis

1980-99

1975-79

1970-74

1965-69

0

1

2

3

4

5

6

7

8

9

10

0 5 10 15 20 25 30 35 40

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

Incidence of RRT in different countries

Incidence of RRT in 1965-2011Great changes over time, FRKD

19651967

19691971

19731975

19771979

19811983

19851987

19891991

19931995

19971999

20012003

20052007

20092011

0

10

20

30

40

50

60

70

80

90

100

> 75 v

65-74 v

45-64 v

20-44 v

Incidence per million inhabitants

Year

Incidence of RRT per age group in the Nordic countries

All

75+

65-74

45-64

20-44

0-19

0 100 200 300 400 500

FinlandSwedenNorwayDenmarkIceland

Incidence per million (age-related) population

Incidence of RRT in the age group 75+

FinlandSpain

United KingdomNorway

DenmarkSwedenIceland

The NetherlandsAustriaFrance

BelgiumGreece

0 100 200 300 400 500 600 700 800 900 1000

Incidence per million (age-related) population

ERA-EDTA Registry Annual Report 2011

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

Finnish Registry of Kidney Disease, FRKD

INCIDENCE

PREVALENCE

MORTALITY

LABORATORY

Tx POLICY

Prevalence of RRT by treatment group , FRKD, 2013

In-center HD

Home HDAPDCAPD

Kidneytransplanted

Prevalence/million inhabitants

Prevalence of RRT by region, FRKD, 2013

Prevalence/million inhabitats, age and sex adjusted

South WesternSouthernWhole countryWestern EasternNorthern

Prevalence of RRT in different parts of the world

Calculated survival

20 30 40 50 60 70 800

10

20

30

40

50

60

70

Age

Expected survival (years)Annual Report

2010

General population

Kidney transplant patients

Dialysis patients

Mortality in RRT by region, FRKD, 2013

Mortality/1000 patient years, age and sex adjusted

NorthernEasternWesternWhole countrySouth Western Southern

0 1 2 3 4 5 6 7 8 9 10

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

PCKD

DM1

DM2Amyloidosis

Years after RRT start

Probability of survival, adjusted for age and sex

Probability of survival by diagnosis, FRKD

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” ?

International ratio of prevalence/incidence ,FRKD Report 2009

RussiaUnited States

GreeceItaly

Belgium, Dutch speakingBelgium, French speaking

AustriaDenmark

New ZealandAustralia

The NetherlandsEstonia

United KingdomSweden

FranceIceland

NorwayJapanSpain

Finland

0 1 2 3 4 5 6 7 8 9

Finnish Registry of Kidney Disease, FRKD

INCIDENCE

PREVALENCE

MORTALITY

LABORATORY

Tx POLICY

Can we change prognosis?Adherence to guidelines

• Blood pressure• albumin• hemoglobin• urea• CRP• phosphorus• ionized Ca• PTH• lipids• Glucose balance

Distribution of hemoglobin values by hospital district , FRKD 2011

40 20

Hb < 100

20 40 60 80 100Proportion of dialysis patients (%)

Hb 100-119 Hb > 120

0

Country

Missingvalues:6/1774=0,3 %

Laboratory values and survival on dialysis,FRKD

Marker

AlbuminHbCRPPhosphorusCholesterolCreatinineIonized calciumUrea

*Adjusted for age and sex

Association withdeath

P-value*

<0.001<0.001<0.0010.0120.0460.0760.3470.528

Cholesterol and risk of death among dialysis patients

Cholesterol (mmol/l)

< 33-3,94-4,95-5,9> 6

1) Adjusted for age and sex2) Adjusted for age and sex , albumin and creatinine

n

27054344918384

RR1)

10,770,720,760,51

RR2)

10,960,830,830,46

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”

Finnish Registry of Kidney Disease, FRKD

INCIDENCE

PREVALENCE

MORTALITY

LABORATORY

Tx POLICY

Different kidney transplant policy

Where are the living donors?

No. of kidney donors/1 mill. population

0 10 20 30 40 50 60 70

Norway NetherlandsAustriaFranceEstoniaU.K.Belgium

SwedenDenmarkFinlandIcelandRussia

Living / deceased donors

Time on dialysis before first kidney Tx

1990 1995 2000 2005 20100

1

2

3

4

Year of first kidney transplantation

Time on dialysis, years

50 % (median)

75 %

25 %

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

0.5 1 1.5 2 2.5 3 3.5 4 4.5 5 5.50.5

5

1

2

345Risk ratio

0-11 12-23 24-35 36-59 > 60Months on dialysis

Time on dialysis and risk of death after Tx 2000-2010

Helanterä et al, Transplantation 2014

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 !!!

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