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 Renal transplant ESRF management Peritoneal Haemo dialysis -dialysis
End-stage kidney disease management P e R r E H e S i a n t e R a F o m l n m o t - e a r a n d a a i l n g d a s i l e p y m a l l e s a i y n n s t s t i s HOSPITAL or HOME
End-stage kidney disease management Renal transplant ESRF management Peritoneal Haemo HOSPITAL HOSPITAL dialysis -dialysis or HOME or HOME
End-stage kidney disease management PRE-EMPTIVE vs ON DIALYSIS Renal transplant DECEASED DONOR - en bloc; DBD and DCD kidneys LIVING RELATED / UNRELATED - altruistic - antibody removal ESRF - paired / pooled exchange management Peritoneal Haemo HOSPITAL HOSPITAL dialysis -dialysis or HOME or HOME
A T T O M A ccess to T ransplantation and T ransplant O utcome M easures The Scottish Renal Registry
QoL on dialysis and transplantation Survival on dialysis and after Health economics transplantation ATTOM Access to Organ Allocation transplantation
A T T O MIC A ccess to T ransplantation and T ransplant O utcome M easures I n C hildren The Scottish Renal Registry
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
2009 to 2014 UK paediatric data on declined DBD kidneys 615 Kidneys From 308 donors initially declined for paediatric transplantation Transplanted Not transplanted 503 kidneys (82%) 112 kidneys (18%) Adult Paediatric transplant transplant 457 kidneys 46 kidneys
Outcomes for declined kidneys N 3-year renal 3-year patient allograft survival survival % % Survival 95% CI Survival 95% CI Paediatric kidney 46 82 67.1 90.6 97.7 84.6 99.7 only Adult kidney only 384 93.9 90.7 96.1 93.1 89.1 95.6 Adult kidney and 61 87.4 73.5 94.3 97.9 85.8 99.7 pancreas
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/1.73m 2 (Stage V CKD-T) (iii) eGFR ≤ 15mls/min/1.73m 2 (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 27% (82) currently listed prepared for LDT 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 T T O MIC A ccess to T ransplantation and T ransplant O utcome M easures I n C hildren The Scottish Renal Registry
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
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