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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
100
150
200
250
300
350
400
1980
1981
1982
1983
1984
1985
1986
1987
1988
1989
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
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
70
80
90100
110
120
130
140
15019
90
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
Year
Rat
e pe
r milli
on p
opul
atio
n
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
50
100
150
200
250
300
350
400
450
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
1982
1984
1986
1988
1990
1992
1994
1996
1998
2000
2002
2004
2006
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
0
5
10
15
20
25
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
70
75
80
85
90
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
50
55
60
65
70
75
80
85
90
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
Year
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
30
40
50
60
70
80
90
10019
9819
9920
0020
0120
0220
0320
0420
0520
0620
0720
0820
09
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
Year
Per
cent
age
of p
atie
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
40
45
50
55
60
65
70
75
80
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
55
60
65
70
75
80
85
90
0 200 400 600 800 1000 1200
Number of patients with data in centre
Per
cent
age
of p
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
0
5
10
15
20
25
30
35
40
45
50
55
60
10 B
risto
l
1 R
edng
19 N
orw
ch
9 E
xete
r
24 B
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
4 D
orse
t
2 C
ardf
f
16 L
iv R
I
16 C
ovnt
3 N
ottm
1 D
erby
1 S
und
2 C
amb
43 M
iddl
br
1 Ip
swi
1 S
heff
4 C
helm
s
5 C
lwyd
48 D
udle
y
64 E
ngla
nd
16 N
Irel
and
11 W
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)
0
200
400
600
800
1000
1200
1400
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
www.renalreg.com