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UK Strategy for Living Donor Kidney
Transplantation
Lisa Burnapp
Lead Nurse- Living Donation
RTSM, January 2014
Renal Transplant Services Meeting
23rd January, 2012
Lisa Burnapp
Lead Nurse-Living Donation
UK Strategy for LDKT*
* NHSBT UK Strategy for Living Donor Kidney Transplantation, 2010-2014
www.organdonation.nhs.uk
Number of deceased and living donors in the UK, 1 April 2001 - 31 March 2011
1100
1062
DBD donors
DCD donors
Living donors
1000
1045
961
900
858
800
716
703
Number
702
697
700
664
637
634
599
600
624
397
386
400
611
637
485
472
500
609
373
335
288
300
200
200
159
127
100
42
61
73
87
2002-2003
2003-2004
2004-2005
0
2001-2002
2005-2006 2006-2007
Year
2007-2008
Source: Transplant activity in the UK, 2010-2011, NHS Blood and Transplant
2008-2009
2009-2010
2010-2011
Strategic Objective (2010)
“Promote increases in living donation to
match the best international benchmarks
within comparable funding systems”
1. Increase numbers of transplants without compromising
donor safety
2. Increase pre-emptive transplantation and equity of access
3. Develop the National Living Donor Kidney Sharing
Schemes (NLDKSS)
Projected Activity
FY
11/12 12/13 13/14 14/15 15/16 16/17
LDs 1050 1081 1112
(nos)
pmp 17.0 17.5 18.0
1143 1174 1205
18.5
19.0
19.5
Implementation (2012-14)
• Commissioning LDKT
– John Forsythe
• Improving Availability of LDKT Across the UK
– Lorna Marson
• Donor Safety and Welfare
– Vassilios Papalois
• Recipients of LDKT with Higher Immune Risk
– Nizam Mamode
Where are we now?
Number of deceased and living donors in the UK, 1 April 2003 - 31 March 2013
1200
1101
DBD donors
DCD donors
Living donors
1000
1062
1055
1046
961
858
800
664
Number
705
702
697
637
634
599
611
609
624
637
652
600
507
485
472
436
373
400
335
288
200
200
127
73
87
2003-2004
2004-2005
159
0
2005-2006
2006-2007
2007-2008
2008-2009
2009-2010
Year
Source: Transplant activity in the UK, 2012-2013, NHS Blood and Transplant
2010-2011
2011-2012
2012-2013
Projected UK LD Activity*
FY
11/12 12/13 13/14 14/15 15/16 16/17
LD (n) 1050 1081 1112 1143 1174 1205
pmp
17.0
17.5
18.0
18.5
19.0
19.5
2012/13 Activity (pmp)
England
Wales
Scotland
Northern Ireland
17.3 (12.3 – 21.6)
15.4
14.1
30.4
* NHSBT UK Strategy for Living Donor Kidney Transplantation, 2010-2014
www.organdonation.nhs.uk
Commissioning
Commissioning (1)
• England
– April 2013: National commissioning for adult Tx
through NHS England/Tx CRG
– 2013/14: Tariff reference costs/currencies/shadow
tariff in place; full implementation delayed to 2015/16
– Paediatrics- separate funding stream (NHS E)
– April 2013: single policy for reimbursement of
expenses for living donors; ^ UK-wide consistency
Commissioning (2)
• Scotland
– Scottish Renal Transplant Review
– National commissioning recommended;
discussions commenced
• Wales and Northern Ireland
– Commissioning arrangements support LDKT and
compatible with UK-wide integration
Improving Availability of LDKT
Across the UK
Barriers to Timely Listing
1. Lack of standardised
referral system or
pathway
2. Inadequate patient and
professional education
and engagement
3. Delays due to
ineffective use of
technology and
administrative support
12 Recommendations
Targeted Education Programme
• UK MET
– Healthcare professional programme
– Regional roadshow model and pilot site identified
for March/April 2014
– Roll-out UK-wide programme throughout 2014/15
– Supporting educational resources on ODT clinical
website for local use
Development of
National Living Donor Kidney Sharing
Schemes
Living Donor (LD) Kidney Transplants
in the UK
1200
1067
1100
1000
900
3
4
18
50
800
12
10
44
53
70
26
27
75
55
35
55
60
92
88
64
55
50
107
74
89
37
249
700
Number
16
30
61
10
32
600
5
15
279
244
244
249
536
532
511
2011
2012
2013
226
249
170
500
400
2
99
3
6
119
108
300
200
348
346
2003
2004
404
459
503
526
2007
2008
562
595
2009
2010
100
0
2005
2006
Altruistic donor
Paired exchange
ABO incompatible
HLA incompatible
Unrelated donor
Related donor
‘Shared’ Living Donor Kidney Transplants
2012/13
100
Altruistic donor transplant
76
Paired donor transplant
7%
No. of transplants
80
34
12%
60
28
40
15
15
20
32
0
6
4
16
2007/8
2008/9
2009/10
5%
51
55
2011/12
2012/13
39
2010/11
www.giveakidney.org.uk
NLDKSS (1)
• Non-directed altruistic donation
–
–
–
–
–
–
–
Outcomes equivalent to direct LDKT
Routine practice; resource intensive
Exponential increase; trend
Accounts for main expansion in donor pool
Effective collaboration with patient groups
Short altruistic donor chains introduced 2012 (n=22)
Long altruistic donor chains not implementeduntapped potential
– Collaborative, UK-wide research
NLDKSS (2)
• Paired/pooled scheme
–
–
–
–
–
–
Outcomes equivalent to direct LDKT
Effectiveness/confidence increased since 2012
Non-proceeding transplant rate 35% (target 20%)
‘Foreseeable’ reasons reduced; ^ awareness
Uptake of altruistic donor chains under-utilised
8 week clinical standard from KDMR to surgery
agreed but not fully implemented- long delays
– November 2013: 45% of centres identified
capacity constraints preventing UK-wide
expansion of NLDKSS
NLDKSS- Summary
• Clinically effective
• Main expansion in living donor pool
• Significant improvement in performance over time
• Potential for development- capped by inequalities in
capacity and flexibility across the UK
• ‘Human resource’ intensive- workforce planning
initiative for LDCs on target March 2014
Donor Safety and Welfare
Donor Safety and Welfare
• Published best practice guidelines in collaboration with
BTS to support consistent LDKT practice
• Established process for critical incident reporting and
shared learning
• Peer Support, mentoring schemes and monitoring to
be developed in conjunction with wider NHS initiatives
• Defined data sets and definitions to establish pan EU
Living Donor Registry; UK data set to follow
• Electronic reporting/registration systems aligned to IT
developments within NHSBT
Recipients of LDKT with
Higher Immune Risk
Incompatible kidney only transplants in the UK, 1 April 2003 - 31 March 2013
120
HLAi
ABOi
HLAi & ABOi
99
100
84
83
80
75
77
Number
73
78
66
62
60
56
50
46
40
25
25
20
14
11
6
2 3
2
13
3
10
13
8
5
3
0
2003-2004
2004-2005
2005-2006
2006-2007
2007-2008
2008-2009
2009-2010
Year
Source: Transplant activity in the UK, 2012-2013, NHS Blood and Transplant
2010-2011
2011-2012
2012-2013
Recipients at Higher Immune Risk
• Defined clinically agreed definitions for HLAi and
ABOi incompatibility
• Described recommended patient pathways for
inclusion in future best practice guidelines
• Consulted on commissioning/accreditation for centres
performing incompatible transplantation
• Explored feasibility of UK-wide standardisation of
haemagglutinin titre levels in ABOi transplantation
Limitations to Implementation
• Timeframe for completion of more complex
recommendations
• Dependence on ‘multi-agency’ implementation
• Lead time from establishing improvement to
additional transplant activity
• Centre variations – capacity and capability
What Next?
Living Donor Kidney Transplantation
2020: A UK Strategy
LDKT 2020
Evidence Base (1)
• LDKT makes a valuable contribution to overall
Tx activity
• Development of the NLDKSS by improved
utilisation of the growing NDAD pool would
maximise Tx benefit
• Recipient and transplant survival rates in LDKT
remain superior to those in DDKT
Evidence Base (2)
• Donor safety and welfare remains central to
the development of future strategy
• LDKT remains the treatment of choice to
achieve pre-emptive Tx and Tx for complex
recipients
• LDKT is a high quality, cost effective
treatment. Effective commissioning is key to
sustainability.
Development Methodology
LDKT 2020 has been informed by:
• UK-wide trends in LDKT practice and global
benchmarking
• Emerging research and audit data
• On-going engagement with key stakeholders
• Gap analysis of partially achieved objectives
for 2010-14
• Root cause analysis of each shortfall
Strategic Objective
“To develop a world class service in living
donor kidney transplantation”
Key Theme 1
Increase LDKT activity for both adult and
paediatric recipients, ensuring that donor
safety and welfare is consistently
sustained through best clinical practice.
Key Theme 2
Maximise patient benefit by ensuring that
all suitable recipients have equity of
access to LDKT and that the principle of
‘transplant first’ is embedded in best
clinical practice.
Key Theme 3
Maximise the opportunities for suitable
donors and recipients to contribute to and
benefit from the shared living donor pool
by ensuring that the National Living Donor
Kidney Sharing Schemes (NLDKSS) are
both clinically and cost effective.
*From Council of Europe, Newsletter Transplant, vol 17, September 2012
www.transplant-observatory.org
Projected Activity: LDKT 2020
FY
14/15 15/16 16/17 17/18 18/19 19/20
LDs 1143 1174 1205 1236 1267 1298
(nos)
pmp 18.5 19.0 19.5 20.0 20.5 21.0
Living Kidney Donation:
Options
Suitable
directed
donor
Transplant
tourism
Paired
donation
No
No
Deceased
donor list
ABOi or
HLAi
Yes
Yes
Yes
Transplant
Domino
donor
Altruistic
donor
Original source courtesy of
Keith Rigg
Proposals
Gap 1
• Lack of consistency and integration of
LDKT commissioning models across all
four UK countries
Objective 1
• Work with DHs in all 4 UK countries to:
– Influence national commissioning where
they do not exist
– Ensure commissioning arrangements
support UK-wide integration
– Create effective activity-led funding
streams within individual Trusts
Gap 2
• Shortfall in capacity and infrastructure to
maximise LDKT activity and improve
effectiveness of the NLDKSS
Objective 2
• Work with commissioners and clinicians
to:
– Provide the infrastructure and support to
develop all areas of LDKT activity,
particularly NDAD and the NLDKSS
Gap 3
• Lack of consistency in applying the
principles of ‘transplant first’ across
nephrology practice.
Objective 3
• Roll-out focused healthcare professional
education programme (UK MET) with:
– Regional roadshows
– NHSBT hosted web-based resources
Gap 4
• Lack of consistency information to
maximise donor safety and welfare in
both the short and the long-term.
Objective 4
• Work with EU and UK colleagues and
agencies to achieve state of the art
donor care through:
– Reliable donor registries
– Models of peer support/review
– Participation in relevant research
Gap 5
• UK-wide variance in clinical
management of recipients at higher
immune risk.
Objective 5
• Maximise transplant benefit by:
– Promoting consistency and standardisation
in clinical practice
– Maximising the potential of the NLDKSS
Proposed Implementation
• Collaborative approach
• Detailed action plan
• KAG sub-group with co-opted members
from all stakeholder groups
LDKT 2020: Next Steps
• External key stakeholders:
– circulate for comment
• NHSBT:
– Senior Management Team (January)
– Executive Team (February)
– NHSBT Board (March)
Acknowledgements
Colleagues within NHSBT
– Rachel Johnson, Iain Harrison, Lin Shelper
– Emma Billingham, Karen Quinn, James Neuberger
Colleagues beyond NHSBT
– All Implementation Steering Group members
– John Forsythe, Lorna Marson, Vassilios Papalois
– Nizam Mamode, Andrew Bradley, Chris Watson
– Keith Rigg, Nesta Hawker
– Living donor co-ordinators, clinical and H&I
colleagues
– Give a Kidney
Thank you.
[email protected]