A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children’s to adult services in Ireland

Background: Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children’s to adult services. A poorly planned transition is associated with adverse outcomes such as non-adherence to treatment and loss to follow-up, together with negative social and emotional outcomes. However, there is little descriptive data on how organisations are currently managing transition. Aim: To obtain an overview of organisational approaches to transition on the island of Ireland, and to explore important organisational factors that may influence the effectiveness of the process. Methods: A cross-sectional questionnaire survey. One of the four Health Services Executive areas in the Republic of Ireland and the whole of Northern Ireland. Participants were service providers in statutory and non-statutory organisations providing transition services to young adults with life-limiting conditions. Results: The survey was distributed to 55 organisations. The overall response rate was 29/55 (53%). The approach to transition most commonly used focused on interagency communication and collaboration. Key factors in an effective transition were reported as: early commencement; effective communication between the young adult, their family, and services; the availability of appropriate adult services; and effective preparation through collaboration with the young adult and their family. However, implementation of these processes was inconsistent. Conclusions: The findings demonstrate that caring for young adults with life-limiting conditions presents a considerable challenge to organisations and that transition from children’s to adult services is an important part of this challenge.