Objective Despite improvements in recent years at many centres, there remains an overall lack of consistency in the healthcare and support services provided to young people during their transition from paediatric to adult transplant units. Concerns that such deficiencies may be causally related to subsequent graft loss through patient non-concordance have prompted calls for the delivery of a more patient-centred service. To address these issues, representatives from major transplantation centres in the UK (cardiac, hepatic, renal) and across all disciplines were brought together to produce a series of consensus statements specifying key actions needed to improve the quality and consistency of transition healthcare.
Design Participants at the meeting included transplant physicians and surgeons from both adult and paediatric centres, allied health professionals (nurse specialists, psychologists, psychosocial support workers, transplant coordinators, youth workers), as well as young or adolescent transplant patients, their parents/carers and representatives of various support groups concerned with the young transitioning patient. The meeting consisted of presentations, group discussions (plenary and breakout) and a final discussion led by the seven participants who comprised the consensus panel.
Results Seven consensus statements emerged from the meeting, which are strongly representative of the current opinion of families and the UK transplant community.
Conclusions The actions they specify may therefore be seen as recommendations for timely and wide adoption, and as guidelines for best practice.
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Ms Paula Banda, northern coordinator, GUCH Patients Associationa; Mr Adam Briggs, transplant patienta; Ms Julie Flett, paediatric transplant liaison sister, Cardiothoracic Transplant Unit, Freeman Hospital, Newcastle upon Tynea; Ms Naomi Ford, parent of transplant patienta; Dr Paul Harden, consultant nephrologist, Churchill Hospital, Oxfordb; Ms Mary Jewels, adult transplant outpatient sister, Cardiothoracic Transplant Unit, Freeman Hospital, Newcastle upon Tynea; Dr Clive Lewis, consultant cardiologist and transplant physician, Papworth Hospital NHS Trust, Cambridgeb; Dr Stephen Marks, consultant paediatric nephrologist, Great Ormond Street Hospital for Children and UCL ICH, Londona; Dr David Milford, consultant nephrologist, Birmingham Children's Hospitala; Dr Amy McNaughton, clinical psychologist, Cardiothoracic Transplant Unit, Freeman Hospital, Newcastle upon Tynea; Dr Donal O’Donoghue, national clinical director for kidney services, Department of Healtha; Mr Nicholas Orwin, transplant patienta; Ms Vashti Poole, GIFTa; Dr Marianne Samyn, consultant paediatric hepatologist, King's College Hospital, Londona; Ms Sarah Tizzard clinical nurse specialist, Paediatric Liver Centre, King's College Hospital, Londonb; Ms Grainne Walsh, paediatric transplant clinical nurse specialist, Evelina Children's Hospital, Londonb; Professor Alan Watson (Co-Chair), consultant paediatric nephrologist, Nottingham University Hospitalsb; Dr Nicholas Webb (Co-Chair), consultant paediatric nephrologist, Royal Manchester Children's Hospitalb; Dr Jo Wray, health psychologist, Great Ormond Street Hospital for Children NHS Trust, Londonb
↵b consensus discussion panel.
Funding The consensus meeting was supported by an educational grant from Astellas Pharma and coordinated by GIFT, the children's transplant charity.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.