Highlights from the Registry year and Annual Report

Professor Terry FeestAssistant DirectorUK Renal Registry

UK Renal Registry2011 Annual Audit Meeting

The UK Renal Registry 2011 - Change, Highlights, Developments

Terry FeestAssistant DirectorUK Renal Registry

2011 – a year of change

• 2 new directors and other personnel changes• Late report• Revised processes for data handling• Exciting developments• Exciting future

….but first – the Report

UK Renal Registry 13th Annual Report

Figure 1.3: UK incident RRT rates between 1980 and 2009

0

50

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400

1980

1981

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2009

Year

Rat

e pe

r milli

on p

opul

atio

n0 - 44

45 - 64

65+

Total

UK Renal Registry 13th Annual Report

Figure 1.1: RRT incident rates in the countries of the UK 1990-2009

50

60

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80

90100

110

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130

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15019

90

1991

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r milli

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atio

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EnglandN IrelandScotlandWales

Late presentation rate by year (restricted to 11 centres contributing data for all of 2004-2009)

0

20

40

60

80

100

2004 2005 2006 2007 2008 2009

Year

Per

cent

age

of p

atie

nts

% ≥ 12 months

% 6- <12 months% 3- <6 months

% <3 months

p for trend <0.0001

IHD & PVD - & malignancy

UK Renal Registry 13th Annual Report

0

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Romania

Iceland

Finland

Norway UK

Austra

lia

Netherland

s

New Zealand

Scotla

ndPola

nd

Sweden

Denmark

Austria

Canada

Belgium (F

rench)

*

Belgium (D

utch)*

Greece

Japa

nUSA

Taiwan

RR

T in

cide

nce

rate

(pm

p)

Fig. 1.13 International comparison of RRT acceptance rates

UK Renal Registry 13th Annual Report

Figure 2.2: Growth in prevalent patients, by treatment modality at the end of each year 1982-2009

05,000

10,00015,00020,00025,00030,00035,00040,00045,00050,000

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1984

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2008

Year

Num

ber o

f pat

ient

s

PDHome HDHDTransplant

Figure 6.1: Trend in 1 year after 90 day incident patient survival by first modality 2002-2008 (adjusted to age 60) (excluding

patients whose first modality was transplantation)

0.80

0.82

0.84

0.86

0.88

0.90

0.92

0.94

0.96

2002 2003 2004 2005 2006 2007 2008 2002 2003 2004 2005 2006 2007 2008

Year

Sur

viva

l

Haemodialysis Peritoneal dialysis

Figure 6.8: Change in KM long term survival by year of starting RRT, for incident patients aged 18-64 years

404550556065707580859095

1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

Year

Per

cent

age

surv

ival

1 year2 year3 year4 year5 year6 year7 year8 year9 year10 year

UK Renal Registry 13th Annual Report

Figure 2.10: Detailed dialysis modality changes in prevalent RRT patients from 1997-2009

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30

1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009

Year

Per

cent

age

on m

odal

ity % Hospital HD% CAPD% Sattellite HD% APD% Home HD

Figure 6.15: Funnel plot for age adjusted 1 year after 90 days survival, 2005-2008 cohort

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95

100

0 100 200 300 400 500 600 700 800 900

Number of incident patients

Per

cent

age

surv

ival

Dotted lines show 99.9% limitsSolid lines show 95% limits

Comorbidity

•Only 45.6% (n=5,617) of the incident adult RRT patients reported to the UKRR between 2008 and 2009 had comorbidity data. •In 2009, three centres provided data on 100% of new patients and 17 centres provided data for less than 5% of their new patients.

Figure 4.5: Percentage of patients with comorbidity by ethnic origin in each age group at the start of RRT 2008-2009

0

20

40

60

80

18-34 35-44 45-54 55-64 65-74 75+Age group

Per

cent

age

of p

atie

nts

(95%

CI)

WhiteSouth AsianBlack

Frequency of causes of death

Figure 6.25: Frequency of causes of death for prevalent dialysis patients in 2009

Cardiac disease24%

Cerebrovascular disease

5%

Infection19%Malignancy

7%

Other9%

Uncertain22%

Treatment withdrawal

14%

Figure 6.26: Frequency of causes of death for prevalent transplant patients in 2009

Cardiac disease18%

Cerebrovascular disease

4%

Infection27%Malignancy

23%

Uncertain17%

Treatment withdrawal

0%

Other11%

Dialysis Transplant

Figure 8.4: Change in the percentage of patients with URR > 65% and the median URR between 1998 and 2009 in the UK

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Per

cent

age

of p

atie

nts

% of patients with URR >65%and 95% CI

Median URR and quartiles

Figure 9.26: Percentage of incident and prevalent dialysis patients (1998-2009) with Hb ≥10 g/dl

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10019

9819

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cent

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nts

Upper 95% CI% with Hb ≥ 10g/dlLower 95% CI

Incident patients Prevalent patients

UK Renal Registry 13th Annual Report

Figure 10.2 Funnel plot of percentage of haemodialysis patients with phosphate within the range specified by the RA

clinical audit measure (1.1-1.8mmol/L) by centre in 2009

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0 100 200 300 400 500 600 700 800 900 1,000 1,100 1,200

Number of patients with data in centre

Per

cent

age

of p

atie

nts

Solid lines show 95% limitsDotted lines show 99.9% limits

Figure 10.7: Funnel plot of percentage of haemodialysis patients with adjusted calcium within the range (2.2-2.5 mmol/L) by centre in

2009

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Number of patients with data in centre

Per

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age

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atie

nts

Dotted lines show 99.9% limitsSolid lines show 95% limits

UK Renal Registry 13th Annual Report

Figure 3.16: Percentage of prevalent transplant patients achieving blood pressure target of <130/80mmHg by centre on 31/12/2009

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10 B

risto

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1 R

edng

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orw

ch

9 E

xete

r

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elfa

st

0 N

ewry

0 D

onc

2 T

yron

e

1 A

ntrim

1 T

ruro

49 L

eic

10 Y

ork

1 S

wan

se

9 B

radf

d

1 G

louc

14 S

then

d

7 D

erry

12 L

eeds

3 W

olve

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orse

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ardf

f

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iv R

I

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ovnt

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ottm

1 D

erby

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und

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amb

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iddl

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swi

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heff

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helm

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lwyd

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udle

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ngla

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Irel

and

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ales

59 E

, W &

NI

Centre

Per

cent

age

of p

atie

nts

Upper 95% CI% with SBP/DBP <130/80Lower 95% CI

N = 8,303

The centre represented by an unfilled symbol has its final event time as the plotting position as the median time could not be estimated

Unadjusted centre rate Unadjusted centre rateNational rate 95% Lower CL95% Upper CL 99.8% Lower CL99.8% Upper CL

Med

ian

time

to w

aitli

stin

g (d

ays)

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Number waitlisted0 20 40 60 80 100 120 140 160 180 200 220 240 260 280 300 320

654 days

Access to transplantation• After adjustment for case mix, there are significant

centre differences for the probability of :– Activation on the kidney waiting list (p<0.0001) – Transplantation (p<0.0001)

• Patients starting in non-transplanting centres are significantly less likely to be – Registered for transplantation [OR (odds ratio) 0.90]– Transplanted from a donor after cardiac death or a living

kidney donor (OR 0.69) • Once registered, patients in all units had an equal

chance of transplant from a donor after brain stem death.

2011 – a year of change

• 2 new directors and other personnel change

• Late report• Revised processes for data handling

Insanity

The definition of insanity is doing the same thing over and over and expecting different

results.

Benjamin Franklin

Data handling review

The process within the RR– Automating and speeding– Consistency & Accuracy– Data items -Essential? Still used?– Checks against UKT and ONS data

• Process faster• Focussed on important items• More consistent and accurate

Data review

• Taken time to resolve some long-standing issues

• New communications with units– Data tables and spreadsheets

• “Personal data managers”• Additional data staff and programming time

• 6 months for a year’s data

Data review

• 6 months for a year’s data• 2010 collection by end of March 2012• 2011 collection by end of October 2012• 2012 collection by end of April 2013

Data review

• Registry dependent on the data supplied– Ownership of extraction routines– Liaison with suppliers

• Registry engage with Renal Units

2011 – a year of change

• 2 new directors and other personnel change

• Late report• Revised processes for data handling• Exciting developments

Paediatric database

• Worked closely with the paediatric nephrologists

• Understanding of different clinical encvironments and thus problems

• Near (1 year) to combining paediatrics and adults into one seamless database

RR - developments

• HES data from 1998 until 2010 matched and linked to the cohort of patients starting renal replacement therapy from 2002 to 2006 to produce an anonymised database for analysis.

Vascular access

• Plan to focus on very few items to give best value

• Work with Kidney Care UK• To develop a sustainable system for

continuous collection of vital vascular access data

And do not forget PD…

• Paper “Small not necessarily beautiful”• HQIP submission

And finally…

• Explore a new system of collecting data in almost real time using the experience / methods from RPV

2011 – a year of change

• 2 new directors and other personnel changes

• Late report• Revised processes for data handling• Exciting developments• Exciting future

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