Stephen Marks Consultant Paediatric Nephrologist Great Ormond - - PowerPoint PPT Presentation

Transplant first

Stephen Marks

Consultant Paediatric Nephrologist

Great Ormond Street Hospital for Children and UCL GOS Institute of Child Health, London, UK BAPN /KQuIP Paediatric Nephrology Multi-Disciplinary Quality Improvement Day, Birmingham, 9 November 2018

End-stage kidney disease management

ESRF management

Renal transplant Haemo

• dialysis

Peritoneal dialysis

End-stage kidney disease management

E S R F m a n a g e m e n t R e n a l t r a n s p l a n t H a e m

• d

i a l y s i s P e r i t

• n

e a l d i a l y s i s

HOSPITAL

• r HOME

End-stage kidney disease management

ESRF management

Renal transplant Haemo

• dialysis

Peritoneal dialysis

HOSPITAL

• r HOME

HOSPITAL

• r HOME

End-stage kidney disease management

ESRF management

Renal transplant Haemo

• dialysis

Peritoneal dialysis

HOSPITAL

• r HOME

HOSPITAL

• r HOME

PRE-EMPTIVE vs ON DIALYSIS DECEASED DONOR

• en bloc; DBD and DCD kidneys

LIVING RELATED / UNRELATED

• altruistic
• antibody removal
• paired / pooled exchange

A ccess to A T T O M T ransplantation and T ransplant O utcome M easures

The Scottish Renal Registry

Survival on dialysis and after transplantation Health economics QoL on dialysis and transplantation

ATTOM

Organ Allocation Access to transplantation

A ccess to A T T O MIC T ransplantation and T ransplant O utcome M easures

The Scottish Renal Registry

I n C hildren

Timeline

• 2015:

Agreement from 13 paediatric nephrology units

• 2016:

Approval from national bodies

• BAPN, NHSBT, BTS, TRA, UKRR
• 2017:

Supplemental data request Top 3 transplant CSG projects Formation of project board UCL PhD Research Fellowship

• 2018:

Analysis of data Project team meetings Grant submission

Timeline

• 2015:

Agreement from 13 paediatric nephrology units

• 2016:

Approval from national bodies

• BAPN, NHSBT, BTS, TRA, UKRR
• 2017:

Supplemental data request Top 3 transplant CSG projects Formation of project board UCL PhD Research Fellowship

• 2018:

Analysis of data Project team meetings Grant submission

Introduction

• Variation in access to transplantation

across UK in adult and paediatric nephrology units

• Different decline rates to deceased donor

kidneys offered for transplantation

• NHSBT work in collaboration with BAPN

615 Kidneys From 308 donors initially declined for paediatric transplantation Transplanted 503 kidneys (82%) Not transplanted 112 kidneys (18%) Adult transplant 457 kidneys Paediatric transplant 46 kidneys

2009 to 2014 UK paediatric data on declined DBD kidneys

Outcomes for declined kidneys

N 3-year renal allograft survival 3-year patient survival % Survival 95% CI % Survival 95% CI Paediatric kidney

• nly

46 82 67.1 90.6 97.7 84.6 99.7 Adult kidney only 384 93.9 90.7 96.1 93.1 89.1 95.6 Adult kidney and pancreas 61 87.4 73.5 94.3 97.9 85.8 99.7

Aims and methods

• To assess transplantation plans

– all Stage V-CKD paediatric patients in UK

• Supplemental anonymised questionnaire for

any child (aged < 18 years)

– 13 paediatric nephrology centres – census date of 31 December 2016 (i) on chronic dialysis (Stage V CKD-D) (ii) renal transplant recipient but with eGFR ≤15mls/min/1.73m2 (Stage V CKD-T) (iii) eGFR ≤15mls/min/1.73m2 (Stage V CKD)

Results

• 308 patients from 12

paediatric nephrology centres in UK

– mean weight = 27.9kg – mean height = 117.3cm

Transplantation plans

45% (139) currently being prepared for LDT 27% (82) currently listed for DBD+/-DCD RTx

Barriers to pre-emptive transplantation

Mean predicted time to transplant = 13.6 m

• 71 (31%): child presented in ESKD
• 60 (27%): lack of suitable donor
• 21 (9%): highly sensitised
• 55 (24%): too young for RTx
• 31 (14%): requirement for nephrectomies
• 35 (15%): other

Barriers to transplantation

• 57 (20%): size of child
• 12 (4%): late presentation
• 55 (19%): patient psycho-social factors
• 104 (36%):disease factors
• 15 (5%): unit infrastructure factors
• 80 (28%): live donor availability
• 82 (29%): deceased donor availability
• 24 (8%): other

Why get involved ?

• Accurate benchmarking of unit level

co-morbidity burden / transplant related resource availability

• Share ‘best practice’ with UK clinical

evidence base to drive UK clinical policy

• NiHR portfolio income to NHS trusts
• Survival probability model to improve

equity of access

• Understanding PROMs in renal patients
• Improve data returns and complete

dataset for analyses by BAPN/UKRR/NHSBT

A ccess to A T T O MIC T ransplantation and T ransplant O utcome M easures

The Scottish Renal Registry

I n C hildren

Timeline

• 2015:

Agreement from 13 paediatric nephrology units

• 2016:

Approval from national bodies

• BAPN, NHSBT, BTS, TRA, UKRR
• 2017:

Supplemental data request Top 3 transplant CSG projects Formation of project board UCL PhD Research Fellowship

• 2018:

Analysis of data Project team meetings Grant submission

Timeline

• 2015:

Agreement from 13 paediatric nephrology units

• 2016:

Approval from national bodies

• BAPN, NHSBT, BTS, TRA, UKRR
• 2017:

Supplemental data request Top 3 transplant CSG projects Formation of project board UCL PhD Research Fellowship

• 2018:

Analysis of data Project team meetings Grant submission

Future considerations

• Questionnaire on access and barriers to

transplantation

– when chronic dialysis patients weigh 10kg – when Stage V CKD patients weigh 10kg – at listing for deceased donor renal transplant – at time of transplantation (LD, DBD, DCD)

• Independent review panel of all children

– will include those not having access to transplantation for other reasons

• ethical, medical, psychosocial reasons

Acknowledgements

• 12 paediatric nephrology teams

– consultants – trainees – clinical nurse specialists

• Ramnath Balasubramanian
• Matko Marlais