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Anna

Anna Francis

Year of Award: 2015 Award State: Queensland Health And Medicine > Diseases, Disorders And Syndromes
To start a transition programme for teenagers and young adults with kidney transplants in Queensland - UK, USA
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Advances in medical care mean increasing numbers of children with end stage kidney disease are surviving to adulthood and graduating from paediatric to adult care. As an adolescent becomes an adult, the primary responsibility of care moves from the parents (or care-giver) to the young adult. For youth with kidney disease, the path of transition to adulthood has added complexity. Their illness often hinders individuation, as the child may be reliant on parents for their day-to-day medical care. In addition, advanced kidney disease is associated with cognitive impairment and psychosocial maladjustment when compared to healthy controls.(1-5).

Currently in Queensland, we have no structured transition clinic for young people with end stage kidney disease. The purpose of this fellowship was to attend the American Transplant Conference and visit centres of excellence in Heidelberg, Nottingham and Boston to learn about their transition programmes in order to help start a transition programme in Queensland.

Transition is not a single event in time, but rather a planned, purposeful transfer of care over time between the paediatric to adult centre whilst fostering ownership of care in the young adult. There are multiple ways to foster this process. In Heidelberg, I learnt about the importance of a “transition lead”, having one point person to be the point of contact for the young person during the process and check that everything is on track. In Nottingham, I saw how integral youth workers are to the transition process. They support the young person, encouraging empowerment and the building of self-esteem. In Boston, I met with adult nephrologists who explained their strategies for easing parental anxiety around this time of change whilst building a primary relationship with the young person. In addition, I spoke with nurse specialists, pharmacists and social workers who provided insight on interventions to improve medication adherence and ways to smooth the path of transition. 

 

In all three centres I met with paediatric nephrologists who explained the history and current state of their transition programmes as well as practical aspects of setting up a programme. Sessions at the American Transplant Congress dedicated to transition discussed interventions to improve transition, like shared care clinics, formal assessment of transition readiness, using technology to increase treatment adherence and risk factors for non-adherence.

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