ESPN 51th Annual Meeting

ESPN 2018


 
Barriers to kidney transplantation in children – a prospective national study
RAMNATH BALASUBRAMANIAN 1 MATKO MARLAIS 2 MORDI MUORAH 3 CAROL INWARD 4 BEN REYNOLDS 5 PALLAVI YADAV 6 HENRY MORGAN 7 MOHAN SHENOY 8 YINCENT TSE 9 FARIDA HUSSAIN 10 SARAH GRYLLS 11 MANISH SINHA 2 STEPHEN MARKS 12

1- DEPARTMENT OF PAEDIATRIC NEPHROLOGY, GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST, LONDON, UK
2- DEPARTMENT OF PAEDIATRIC NEPHROLOGY, EVELINA LONDON CHILDREN’S HOSPITAL, LONDON, UK
3- BIRMINGHAM CHILDREN’S HOSPITAL, BIRMINGHAM, UK
4- BRISTOL ROYAL HOSPITAL FOR CHILDREN, BRISTOL, UK
5- ROYAL HOSPITAL FOR CHILDREN, GLASGOW, UK
6- LEEDS CHILDREN’S HOSPITAL, LEEDS, UK
7- ALDER HEY CHILDREN’S HOSPITAL, LIVERPOOL, UK
8- ROYAL MANCHESTER CHILDREN’S HOSPITAL, UK
9- GREAT NORTH CHILDREN’S HOSPITAL, NEWCASTLE, UK
10- NOTTINGHAM CHILDREN’S HOSPITAL, NOTTINGHAM, UK
11- SOUTHAMPTON CHILDREN’S HOSPITAL, SOUTHAMPTON, UK
12- UCL GREAT ORMOND STREET INSTITUTE OF CHILD HEALTH, LONDON, UK
 
Introduction:

 Pre-emptive living donor renal transplantation is widely accepted as the gold standard treatment for children with end-stage kidney disease (ESKD). Despite this, many children spend years on dialysis before proceeding to transplantation.  However, the reasons for this are not well documented in the literature.  The aim of this study was to investigate access to paediatric renal transplantation and potential barriers within the process.

Material and methods:

 

This was a prospective multi-centre observational study on behalf of the British Association for Paediatric Nephrology where paediatric nephrology centres in the United Kingdom (UK) were asked to provide data on all children (aged <18 years) with ESKD (defined as an estimated glomerular filtration rate ≤15mls/min/1.73m2.  Data collected included (where relevant) current renal replacement therapy, future transplantation plans with stage of living donor work-up and deceased donor listing.  In those where transplantation was not planned or delayed, barriers to transplantation and estimated timescales were documented. 


 

Results:

 308 children with ESKD were included in this study from 12 out of 13 paediatric nephrology centres in the UK.  180 (58%) children were on dialysis, 37 (12%) were transplanted (Stage V(T)-CKD) and 91 (30%) children had ESKD but were currently pre-dialysis.  139 (45%) were currently being worked up for a living donor transplant, 82 (27%) children were listed for a deceased donor transplant, 22 (7%) children were both being worked up for a living donor transplant and listed for a deceased donor transplant.  The mean estimated time to transplant in those with active plans was 13.6 months.  226 (73%) children were not being planned for a pre-emptive transplant or were already on dialysis. The commonest reasons for children not having a pre-emptive transplant were that the child presented in ESKD (31%), lack of a suitable donor (27%) or being too young for transplant at the time of needing renal replacement therapy (24%).  High HLA sensitisation was listed as a reason in 9% of children.

The commonest cited factors preventing transplantation from occurring in children were disease factors (36%), donor availability (27%) and size of the child (20%).  Patient psycho-social factors were listed as a barrier in 19% of children.

Conclusions:

 

In this study we have documented the main barriers to renal transplantation in children. Some factors identified may be potentially modifiable through local or national intervention, and include donor availability and patient psycho-social factors.  A further national prospective study is planned to evaluate potential modifiable barriers to transplantation and to determine how best to ameliorate them.  Improving access to renal transplantation for children will reduce the proportion of children requiring dialysis and in turn reduce the associated mortality and morbidity.