ESOT 2013 Report – Joint Session ESOT & IPTA: Tackling the transition
Richard Trompeter, London, UK; Jo Wray, London, UK; Lorraine Bell, Montreal, Canada – The transition from paediatric to adult transplantation services is a major challenge for adolescent transplant recipients which may have a dramatic impact on adherence, quality of life, and in the longer term, clinical outcomes and treatment costs. It is essential that adult clinicians understand the specific needs of adolescent transplant patients and are able to address these in a meaningful way. In a joint session arranged by ESOT and the International Pediatric Transplant Association (IPTA), paediatric clinicians from some of the world’s most experienced centres discussed the importance of close collaboration between paediatric and adult services to ease the transition into adult care.
Firstly, Dr Richard Trompeter from Great Ormond Street Hospital in London set the scene by describing the very real clinical consequences that may arise when children who have received organ transplantations reach adolescence and must be transfer from the paediatric clinic where they have been cared for since they first became ill, to an adult transplantation centre which in most cases will be a very different environment from the paediatric clinic. In 2000, a review of 20 young transplant recipients who had been transferred straight to adult centres showed a graft loss rate of 35%. In most cases the graft loss occurred unexpectedly and the authors hypothesised that the underlying cause was non-adherence to immunosuppressive medication . Similarly, US transplant registry data shows reduced five-year survival rates in young adults compared with children younger than 11 years, again most likely due to non-adherence . In contrast, data from the Netherlands and Oxford in the UK shows that problems with non-adherence and other issues during the transition programme can be prevented with relative ease by implementing integrated transitional care programmes [3, 4].
Next, Dr Jo Wray, a psychologist at Great Ormond Street Hospital, outlined the case for regarding adolescents not merely as young adults, but as medically, physiologically and developmentally distinct from both children and adults, which has implications for how adolescent transplant recipients should be cared for to prevent poor outcomes. Adolescence is a time of not only physical but also overwhelming mental changes, often accompanied by psychological issues such as depression, anxiety and low self-esteem, which may be further exaggerated by chronic illness and transplantation [5-7]. Adolescents often feel isolated and poorly understood – and at the same time invincible and immortal, firmly convinced that ‘bad things only happen to other people . Dr Wray reminded the audience that adolescents are not actually fully mature – the pre-frontal cortex, which is responsible for executive function such as planning, problem-solving and impulse control, does not mature until about the age of 25. Against this background, it is easy to understand clinicians’ concerns about non-adherence and poor graft outcomes – published research shows that non-adherence is a frequent issue in transplant recipients across all organ types, not only with medication but also with, for example, clinic attendance and lifestyle advice. In a survey carried out at Great Ormond Street Hospital, one in four teenagers and young adults responded that they were non-compliant with their medication, one in five believed that drug holidays were acceptable, and one in three did not understand their medications . Communication in a style to suit the adolescent patient is essential for providing knowledge and building trust.
In her presentation, Professor Lorraine Bell from the University of Montreal summarised the requirements for successful transition, stressing the importance of recognising the challenges and barriers and developing sustainable strategies to overcome these. Professor Bell led the Adolescent Transition to Adult Care consensus conference, which took place in 2008 and involved a large number of experts from all over the world. The consensus model in this conference was that transition to adult care involves a transition of leadership, from the parent to the young patient, and that development of self-management skills should be encouraged from an early stage . Successful transitional programmes require buy-in from all key stakeholders, not only patients, parents and clinicians but also from healthcare and educational authorities and society at large; Professor Bell concluded by stressing the need for research funding to build the evidence base for improved patient and cost outcomes.
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2.US Renal Data System, 2011.
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8.Wray, J., et al., Adherence in adolescents and young adults following heart or heart-lung transplantation. Pediatr Transplant, 2006. 10(6): p. 694-700.
9.Bell, L.E., et al., Adolescent Transition to Adult Care in Solid Organ Transplantation: a consensus conference report. Am J Transplant, 2008. 8(11): p. 2230-42.