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UK national study of barriers to renal transplantation in children
  1. Ji Soo Kim1,2,
  2. Matko Marlais1,2,
  3. Ramnath Balasubramanian3,
  4. Mordi Muorah4,
  5. Carol Inward5,
  6. Graham C Smith6,
  7. Ben C Reynolds7,
  8. Pallavi Yadav8,
  9. Henry Morgan9,
  10. Mohan Shenoy10,
  11. Yincent Tse11,
  12. Farida Hussain12,
  13. Sarah Grylls13,
  14. Nicos Kessaris1,14,
  15. Manish D Sinha3,15,
  16. Stephen D Marks1,2
  17. On behalf of British Association for Paediatric Nephrology
  1. 1 Paediatric Nephrology, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK
  2. 2 Great Ormond Street Institute of Child Health, University College London, London, UK
  3. 3 Paediatric Nephrology, Evelina London Children's Hospital, London, UK
  4. 4 Paediatric Nephrology, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK
  5. 5 Paediatric Nephrology, Bristol Royal Hospital for Children, Bristol, UK
  6. 6 Paediatric Nephrology, Children's Hospital for Wales, Cardiff, UK
  7. 7 Paediatric Renal Unit, Royal Hospital for Children Glasgow, Glasgow, UK
  8. 8 Paediatric Nephrology, Leeds Teaching Hospitals NHS Trust, Leeds, UK
  9. 9 Paediatric Nephrology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK
  10. 10 Paediatric Nephrology, Royal Manchester Children's Hospital, Manchester, UK
  11. 11 Paediatric Nephrology, Great North Children's Hospital, Newcastle Upon Tyne, UK
  12. 12 Paediatric Nephrology, Nottingham Children's Hospital, Nottingham, UK
  13. 13 Paediatric Nephrology, Southampton Children's Hospital, Southampton, UK
  14. 14 Transplantation, Evelina London Children's Hospital, London, UK
  15. 15 Child Health Clinical Academic Group, King's College London, London, UK
  1. Correspondence to Dr Ji Soo Kim, Paediatric Nephrology, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK; jisoo.kim{at}nhs.net

Abstract

Aims To investigate access to paediatric renal transplantation and examine potential barriers within the process.

Methods Cross-sectional, multicentre, observational study where paediatric nephrology centres in the UK were requested to provide data on transplantation plans for all children (<18 years) with end-stage kidney disease (ESKD).

Results 308 children with ESKD were included in this study from 12 out of 13 UK paediatric nephrology centres. 139 (45%) were being prepared for living donor transplantation and 82 (27%) were listed for deceased donor transplantation. The most common cited factors delaying transplantation from occurring in children were disease factors (36%), donor availability (27%) and size of the child (20%). Psychosocial 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 identified factors may be modifiable through local or national intervention, including donor availability and patient psychosocial factors.

  • paediatric practice
  • nephrology
  • transplantation

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Footnotes

  • Contributors JSK was involved in writing, reviewing and coordinating the submission of the manuscript by closely liaising with the core study group. MM, RB, MDS and SM were involved as the core study group in coordinating data collection, analysing the data, and writing and reviewing the manuscript. Moreover, SM was responsible for overseeing the overall project. MM, CI, GCS, BCR, PY, HM, MS, YT, FH and SG contributed to data collection from their respective paediatric renal centres and have reviewed the manuscript. NK contributed to this project by reviewing the manuscript.

  • Funding This project was supported by the National Institute for Health Research (NIHR) Biomedical Research Centres based at the Great Ormond Street Hospital for Children NHS Foundation Trust, and University College London as well as Guy’s and St Thomas’ NHS Foundation Trust and King’s College London.

  • Disclaimer The views expressed are those of the authors and not necessarily of the NHS, the NIHR or the Department of Health.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval This study was classified as a British Association for Paediatric Nephrology audit and data were collected alongside regular data collection for UK Renal Registry returns. Formal ethical approval was not required under these terms. All data sent outside of a child’s regular clinical team were fully anonymised.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement De-identified participant data are available upon reasonable request from JSK at jisoo.kim@nhs.net. These data include the final spreadsheet with coded and free-text data submitted by each participating centre. Reuse of these data is permitted for confirming reproducibility, and other reuse can be negotiated on a case-by-case basis.

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