Transition to adult services for children and young people with palliative care needs: a systematic review.

Doug, Manjo and Adi, Yaser and Williams, Jacky and Paul, Moli and Kelly, Daniel and Petchey, Roland and Carter, Yvonne H. (2011) Transition to adult services for children and young people with palliative care needs: a systematic review. Archives of Disease in Childhood, 96 (1). pp. 78-84. ISSN 1743-0585

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Abstract

Objective: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. Design: Systematic review Setting: Child and adult services and interface between healthcare providers. Patients: Young people aged 13 to 24 years with palliative care conditions in the process of transition. Main outcome measures: Young people and their families’ experiences of transition, the process of transition between services and its impact on continuity of care, and models of good practice. Results: 92 studies included. Papers on transition services were of variable quality when applied to palliative care contexts. Most focused on common life threatening and life limiting conditions. No standardised transition programme identified and most guidelines used to develop transition services were not evidence based. Most studies on transition programmes were predominantly condition-specific (e.g. cystic fibrosis, cancer) services. Cystic fibrosis services offered high quality transition with the most robust empirical evaluation. There were differing condition-dependent viewpoints on when transition should occur but agreement on major principles guiding transition planning and probable barriers. There was evidence of poor continuity between child and adult providers with most originating from within child settings. Conclusions: Palliative care was not, in itself, a useful concept for locating transition-related evidence. It is not possible to evaluate the merits of the various transition models for palliative care contexts, or their effects on continuity of care, as there are no long-term outcome data to measure their effectiveness. Use of validated outcome measures would facilitate research and service development.

Item Type:Article
Additional Information:

Online First, published on November 30, 2009.

Research Areas:Middlesex University Schools and Centres > School of Health and Education > Institute of Nursing and Midwifery
Citations on ISI Web of Science:3
ID Code:5968
Deposited On:28 May 2010 12:36
Last Modified:18 Jul 2014 19:11

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