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Pediatr Nephrol (2007) 22:720726 DOI 10.1007/s00467-006-0404-z
ORIGINAL ARTICLE
Adolescent dialysis patient transition to adult care: a cross-sectional survey
Lorraine Bell
Received: 4 September 2006 / Revised: 8 November 2006 / Accepted: 23 November 2006 / Published online: 27 February 2007 # IPNA 2007
Abstract Adolescent dialysis patients transitioning to adult care are particularly vulnerable, dependent on complex, demanding and life-sustaining treatment. There is little published information on transition practices for this group. Therefore, a survey was carried out to assess the current status. Results are presented for 58 paediatric dialysis centres in North America and Europe. The majority of centres (53%) did not have a fixed cut-off age for transfer. For those that did, it ranged from 17 to 22 years, with the median 20.5 years and mean [ standard deviation (SD)] of19.9 (1.5) years. Only one third of centres reported a transition programme. Less than 20% of young adult patients were perceived to function autonomously at transfer. The paediatric centres had minimal knowledge of resources at the adult receiving sites. For the majority of programs there was a system in place to assist with application for social and health benefits (83%), an adult dialysis unit linked to the paediatric programme (62%) and an opportunity for patients to choose (78%) and visit (83%) the adult unit prior to transfer. Seventy-four percent of centres without a transition programme believed there was a need for one. This is an area clearly in need of attention.
Keywords Transition . Adolescent . Dialysis . Renal failure . Paediatric . Transfer
Introduction
There is little information on transition to adult care for adolescents on dialysis. Yet this is a particularly vulnerable group, dependant on long-term, life-sustaining, complex, demanding treatment. Non-adherence with diet or medications or missed dialysis sessions may each lead to irreversible injury and even death. Transfer to adult care often occurs at a particularly tumultuous period in young dialysis patients lives, at a stage where they may be asserting their independence, be rebellious and feel significant pressure to behave with the freedom of their peers. In addition, for some, renal insufficiency may have impaired their cognitive [1] and physical development. This may be compounded by significant missed opportunities academically, vocationally and socially.
Transfer and transition to adult-oriented care...