Adolescent dialysis patient transition to adult care: a cross-sectional survey

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)] of 19.9 (+/-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.