INFORM AND IMPROVE PRACTICE - WordPress.com

HOW A RENAL

REGISTRY CAN

INFORM AND

IMPROVE

PRACTICE

Damian FogartyChairman, United Kingdom Renal Registry

Consultant Nephrologist and Senior Lecturer

Queen’s University Belfast and Belfast City

Hospital, Northern Ireland, UK.

[email protected]

[email protected]

SpR Club Belfast Saturday 26th February 2011

OUTLINE

Why have a renal registry?

How does the UK Renal Registry (UKRR) work?

Achievements of renal registries

What is missing?

How can you help?

WHY HAVE A RENAL REGISTRY?

Record and compare activity

Achievement of clinical markers of care

Outlining differences between units

Exploring differences between units

Changing practice

Education on practice and differences

Stimulating change

Measuring the change

http://upload.wikimedia.org/wikipedia/commons/7/7a/PDCA_Cycle.svg

MANAGERS AND CLINICIANS WILL BE EXPECTED, IN THE

FACE OF A GROWING AND INCREASINGLY COMPLEX

DISEASE BURDEN, TO PRESERVE THE GAINS MADE IN

RECENT YEARS, BUT WITH SLOWING RATES OF

INVESTMENT.

HOW DOES THE UK RENAL REGISTRY DO THIS?

Every renal centre in the UK has an IT system that

allows capture of a UKRR dataset (16 systems across

the UK)

Data on all RRT patients extracted quarterly

Fully electronic

Extensive data validation

Funding by capitation fee (£19 per patient per annum)

100% coverage of UK units achieved in 2007

Data submission-Department of Health requirement

Data Protection Act

Approval to use identifiable data through Section 251 of the

Health and Social Care Act (2006)

• Paper records multiple, unstructured,

disorganised, illegible, often garbled

– Patient has left white blood cells at another hospital

– She has no rigors or shaking chills, but her husband states she was very

hot in bed last night

– The patient has been depressed since she began seeing me in 1993

– Healthy appearing decrepit 69-year old male, mentally alert, but forgetful

– She is numb from her toes down

– Patient was alert and unresponsive

– When she fainted, her eyes rolled around the room

– Between you and me, we ought to be able to get this lady pregnant

Sample Proton screens

•Takes minutes to load some systems, if the PC works

•3 passwords to get to the RRT patients

•Additional 5 minutes to double check notes

•Then you start ticking boxes-EASY

ANNUAL REPORTS

“A resource in the development of patient care in

renal disease……comparative data for audit,

benchmarking, planning, policy and research.”

CLINICAL DATA VOLUME AND FLOW @ 2011

75 main units

4 quarters per year

300 files

Hundreds fields/file

~50,000 patients

10 million elements/file

Encryption

Validation steps

Cc last years file

Timelines/transfers

Modalities

Biochemistry

Haematology

Access

60 Million people

75 Main Renal Units

Quarterly data downloads

47,525 prevalent patients 31st December 2008

Annual report on unit activity-incidence, prevalence, modalities

Unit performance displayed as caterpillar plots and funnel charts

www.renalreg.com

HOW TO IMPROVE PRACTICE

National policy

Regional comparison

E.g. transplant outcomes

Local Unit level improvement

Study the clinical processes of care in different centres,

Regular internal audit

Computer-aided prescription

Reminder systems

Individual patient level improvement

Staff resources

Referral /reminders to transplant/access etc

UK Renal Registry 12th Annual Report

Figure 16.1: Annual RRT acceptance rate (pmp) by country in 2007

0

50

100150

200

250

300350

400

450

Ban

glad

esh

Fin

lan

d NZ

UK

Au

stra

lia

No

rway

Net

her

lan

ds

Spai

n

Po

lan

d

Swed

en

Mal

aysi

a

Uru

guay

Rep

ub

lic o

f K

ore

a

Bel

giu

m (

Fren

ch)

Bel

giu

m (

Du

tch

)

Gre

ece

Jap

an USA

Taiw

an

Country

Acc

epta

nce

rat

e (p

mp

)


Figure 4.3: Growth in prevalent patients, by treatment modality

at the end of each year 1982-2008

0

5,000

10,000

15,000

20,000

25,000

30,000

35,000

40,000

45,000

19

82

19

84

19

86

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90

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92

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19

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98

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00

20

02

20

04

20

06

20

08

Year

Nu

mb

er

of

pa

tie

nts

PD

Home HD

HD

Transplant


F i g u r e 4 . 1 : P r e v a le n t r a t e o f R R T p e r

m i l l i o n p o p u la t i o n b y a g e b a n d

a n d U K c o u n t r y

0

4 0 0

8 0 0

1 , 2 0 0

1 , 6 0 0

2 , 0 0 0

2 , 4 0 0

2 , 8 0 0

20

-2

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25

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75

-7

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80

-8

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85

+

A g e g r o u p

Pre

va

le

nt ra

te

p

mp

.

N o r t h e r n Ir e la n d

W a le s

S c o t la n d

E n g la n d

UK Renal Registry 11th Annual Report 2008

Figure 3.13: Median duration of pre-RRT care by age

0

3

6

9

12

15

18

21

24

18-24 25-34 35-44 45-54 55-64 65-74 75-84 ≥ 85

Age band

Month

s

TIMELINE DATA: VARIATION IN PRE-DIALYSIS

TIME ATTENDING THE NEPHROLOGY TEAM

CENTRE VARIATION IN QUALITY MEASURES:

CATERPILLAR PLOT-HOW TO INTERPRET?

Dialysis dose

CENTRE VARIATION IN SURVIVAL:

FUNNEL PLOT-HOW TO INTERPRET?


Figure 3.4: Change in rate of UK incident RRT patients between 1980

and 2008

0

50

100

150

200

250

300

350

400

1980

1981

1982

1983

1984

1985

1986

1987

1988

1990

1991

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

2008

Year

Rate

per

mill

ion p

opula

tion

65+

45 - 64

0 - 44

Diabetics

Total

12th Annual Report

Median age

of new patients

by centre

Figure 3.5: Median age of new patients in each centre in 2008

50 55 60 65 70 75

ChelmsYork

TruroBangorTyroneDundee

AntrimD&GallBrightnDunfnColchrDorset

KlmarnkNorwchShrewExeterCambCarshClwyd

InvernsWrexmB HeartBelfast

MiddlbrKent

BasldnSthendDerbyStokeSheff

Liv AinWolveEdinb

LeicUlster

HullPortsCarlis

SwanseOxfordStevngWirralSund

RedngGlouc

B QEHL KingsGlasgw

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DudleyIpswiM RI

Liv RIL St.GBradfdL Guys

M HopeL Barts

EnglandN IrelandScotland

WalesUK

Cen

tre

Median age (years)


Figure 3.14: Change in rate of late presentation 2003-2008

0

10

20

30

40

50

60

70

80

90

100

2003 2004 2005 2006 2007 2008

Year

Pro

port

ion o

f patients

(%

)

% ≥ 12 months

% 6-12 months

% 3-6 months

% <3 months

CENTRE VARIATION IN QUALITY MEASURES:

WHICH AREA(S) NEED ATTENTION?

Dialysis dose Correction of anaemia

Control of hyperphosphataemia Blood pressure

IMPROVEMENT OVER TIME

UK Renal Registry 9th Annual Report, 2006.

Serum phosphate control chart, HD - Manchester West

20%

30%

40%

50%

60%

70%

80%

2003 2004 2005 2006

Year

% o

f patie

nts

U 3sd

U 2sd

Process Avg

L 2sd

L 3sd

Figure 15.16: Percentage of patients with systolic blood pressure below the 90th

percentile in 2008

0

20

40

60

80

100

Blfst_

P

Bh

am

_P

Brs

tl_

P

Ca

rdf_

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L

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ve

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pl_

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nch

_P

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wc_

P

No

ttm

_P

So

ton

_P

UK

Centre

Pe

rce

nta

ge

of p

atie

nts

Dialysis patientsTransplant patients


Fig ure 1 2 .1 : N um b e r of M R SA b a c te ra e m ia e p is od e s by

c e ntre (A pril 2 0 0 8 - M a rc h 2 0 0 9 )

0 5 1 0 1 5 2 0

B H ea r tB r a d fd

C h el m sEx eterG l o u c

K en tL S t.G

M i d d l bN o ttm

S th en dB a s l d n

C a m bC a r l i sC o v n tD o n c

D o r s etLi v Ai n

N ew cN o r w c h

P r es tnR ed n g

S h effS h r ew

W i r r a lD er b yI p s w i

L K i n gsM R I

O x fo r dP o r tsS to k e

W o l v eYo r k

C o l c h rD u d l eyP l y m thS tev n g

S u n dTr u r o

B r i g h tnH u l l

L R fr eeLi v R I

B r i s to lL G u y sL W es t

M H o p eL B a r tsB Q EHC a r s hLeed s

Lei c

Ce

ntr

e

N um be r o f M R SA e pis ode s

MRSA BACTERAEMI

A EPISODES

BY CENTRE

08-09

VARIATION IN ACCESSING A TRANSPLANT

Every renal centre in the UK has an IT system that supports care of RRT patients Mini-Electronic Patient Record

Links to laboratories, PAS, dialysis machines etc

Quarterly data extracts sent electronically (after encryption) to the UKRR in Bristol

Data validation, error correction

Pre-specified analysis Using RA audit standards where possible

Target haemoglobin, biochemistry markers

Listing for transplant

Survival

Modality use

Timely treatment

Access

Fig 1 Percentage registered for transplantation within two years of starting renal replacement

treatment.

Ravanan R et al. BMJ 2010;341:bmj.c3451

©2010 by British Medical Journal Publishing Group

LIMITATIONS AT UNIT AND UKRR LEVEL

IT infrastructure

Dependence on paper for much inpatient work because it always works short term

Incomplete data

Inaccurate data

Comorbidity

Dataset omits important aspects of care, e.g Hospitalisation

Quality of life

Patient Reported Outcomes Measures (PROM)

Nothing yet on AKI

UKRR

Delays in data submission

Delays in responses to data validation queries

Poor website and communications strategy


Figure 3.9: Proportion of patients with primary renal diseases by centre

‘Other’=all other PRD categories, including: PKD, Pyelonephritis, HTN, RVD and Other

0

10

20

30

40

50

60

70

80

90

100

Liv

Ain

M H

ope

Clw

ydLi

v R

IC

amb

Ipsw

iAnt

rimD

onc

Uls

ter

Car

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Mid

dlbr

Car

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gor

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ottm

Bel

fast

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udle

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ewry

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edng

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est

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ewL

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eart

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irral

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land

N Ir

elan

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tland

Wal

es UK

Centre

Per

cent

age

of p

atie

nts

'Other'GN

DMUncertMissing


Figure 3.9: P

roportion of patients with prim

ary renal diseases by centre

‘Other’=

all other PR

D categories, including: P

KD

, Pyelonephritis, H

TN, R

VD

and Other

0 10 20 30 40 50 60 70 80 90

100

Liv AinM HopeClwydLiv RICambIpswi

AntrimDoncUlsterCardffMiddlbrCarsh

BangorKent

ChelmsNottm

BelfastSthendWolveDudleyNewryL BartsRedngL WestCovnt

AirdrieBasldnPlymthShrewL Kings

StokeSund

TyroneL GuysWrexmB Heart

EdinbStevngNewcDerbySheff

DorsetBradfd

PortsOxfordL St.GB QEHCarlisDunfn

SwanseD&Gall

GlasgwNorwchBrightnPrestnGlouc

HullLeic

AbrdnBristol

YorkInverns

WirralDundee

LeedsM RI

KlmarnkTruro

ExeterL RfreeColchr

EnglandN IrelandScotland

WalesUK

Centre

Percentage of patients

'Other'

GN

DM

Uncert

Missing

DECLINE IN COMORBIDITY REPORTING3

6

0.0

10.0

20.0

30.0

40.0

50.0

60.0

70.0

80.0

2003 2004 2005 2006 2007 2008

Year

Pe

rce

nta

ge

Median percentage amongst only centers returning comorbidity

Percentage of patients with co-morbid data

LEVELS OF CONFOUNDING

Comorbidity

information that is

present in our files

Missing information

within centres at

patient level- e.g. if

sicker patients don’t

get recorded

Survival or

other

outcome

Proportion of missing information at

centre level as a possible indicator of

quality of care

Relationship between serum phosphate and outcome

UK Renal Registry 6th Annual Report 2003 p 133

N=1961 PD, 4712 HD

Yusuf et al Lancet 2004; 364: 937–52

90% of population attributable risk of MI explained by 9 risk factors

1. Dyslipidaemia 49% (apoB/ApoA1 ratio)

2. Smoking 36% (current and former)

3. Hypertension 19% (self-reported)

4. Diabetes 10% (self-reported)

Psychosocial factors, abdominal obesity, exercise, fruit and

vegetable intake and alcohol explained the remainder

The first four had greater effects in younger patients

IF THE UTILITY IN COMORBIDITY RECORDING IS

TO INTERPRET SURVIVAL THEN…

Don’t forget

Patient factors

Pre-dialysis vintage

Dialysis vintage

Severity of what we already measure

Unmeasured comorbidity

Drug therapy and compliance for these disorders

Unit factors

Survival to dialysis bias

Take on rates

Modality choice and changes

Workforce issues

41

IMPROVING COMORBIDITY DATA RETURNS

Shaming and shouting for more data does not work

Understanding the relationship with the renal Clinical

Information System may help

What works in other disciplines?

Understanding variation in systems and process

Linkage

HES data??

GP data

NICN, ICNARC, MINAP, NDA

Use of surrogates-HbA1c and DM, BNP and CCF, LFTs,

CEA,

42

14,000 PATIENTS/FAMILY/STAFF REGISTERED WITH

WWW.RENALPATIENTVIEW.ORG

THE FUTURE FOR THE UKRR

Keep doing what we do but do it better

Increased sharing with other National Clinical

Audits, Hospital Episodes Statistics, other registries

More hard outcomes required

? Leave laboratory data audit at local level

None of this would happen without reliable Renal Unit

IT systems and dedicated Renal Unit staff

WHAT CAN I DO?

GET INVOLVED WITH THE IT

Get involved

Know the IT staff

Lab, xray, PAS,

cardiac, diabetes,

dialysis machines and

any other links

Remove redundancy

Use system for

efficiency

letters

drug surveillance

risk management.45

Ye must

return

data to us

@UKRR

MIND THE GAP! - THE DATA GAP

Primary Renal Disease

Other conditions (comorbidity)

Dates they saw staff first

Incident/prevalent vascular access

Drug treatment

Quality of life

Patient reported outcomes

Use of palliative/conservative care

Thank you for all your hard work

supplying the data

www.renalreg.com

[email protected]

[email protected]

Registry Chairman Dr Damian Fogarty

Registry Committee/Study Groups

Director

Professor Terry Feest

Deputy Director

Chris Maggs

General Manager

Hilary Doxford

Registry Registrars

Dr Clare Castledine

Dr Dan Ford

Dr Lynsey Webb

Systems & Data

Manager

David Bull

Senior Statisticians

Julie Gilg

Margaretha Steenkamp

Project Manager

Sue Shaw

Clinical Informatics

Manager

Fiona Braddon

Statisticians

Anna Casula

Dirk van Schalkwyk

External Project

Contractors

Programmers (p/t)

Matthew Brealey

Andy Langdon

Senior

Clinical Data

Manager

Paul Dawson

External IT

Contractors

Clinical Data Management

Becky Blackwell

Lynsey Billet

Fran Benoy-Deeney

Renal Registry Management Board

(Renal Association Trustees)

A big THANKS

to all the Registry Staff

and collaborators

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