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

BackgroundIncreasing 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.AimTo 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.MethodsA 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.ResultsThe 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.ConclusionsThe 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.