8.5.1 End of life care for adolescents and young adults; The link between evidence and policy (224)

Daniel Kelly, Reader in Cancer & Palliative Care, School of Health & Social Sciences, Middlesex University, London, United Kingdom d.kelly@mdx.ac.uk

Abstract:

Background:

Health service guidance should be underpinned by evidence that determines the relationship between approaches to treatment or care and improved outcomes for patients. For those who will not survive cancer, including teenagers and young adults (TYA'S), the quality of the end of life care available is paramount. The present study was undertaken to appraise the nature of the current evidence and establish its relevance with current UK cancer policy initiatives.

Methods:

Peer-reviewed publications appearing between 1990 and the present day on end of life care for adolescents and young adults was accessed and subjected to thematic analysis using a tool designed for this purpose. This highlighted methods, sample size and key findings. Findings from the literature review were compared with trends in recent cancer policy developments for these age groups in the UK.

Results:

Publications fell into four categories: symptom management and physical distress; psychosocial issues including communication, family support and ethics; service developments and case studies/polemical papers. There were no randomised trials of service delivery, no patient or family satisfaction studies and few researchers employed a qualitative focus. Nursing papers from the United States dominated. The majority of non-nursing papers derived from the psycho-oncology disciplines (psychology, psychiatry and social work) and favoured psychometric methods.

Conclusions:

It is possible to identify significant gaps in the evidence base on end of life care for teenagers and young adults. Significantly less attention has been paid to this patient population than other groups- such as older adults or children with cancer. This presentation will explore themes in the available literature and compare these with policy initiatives currently taking place to advance teenage cancer care and end of life support for all patient groups in the UK.

Recommended reading list:

  • Kelly D & Edwards J (2005) Palliative care for adolescents and young adults. In Faull C, Carter Y & Daniels L (Eds) Handbook of Palliative Care. 2nd Ed. Oxford: Blackwell. 317-331
  • Black N (2001) Evidence-based cancer policy: proceed with care. British Medical Journal. 323: 275-279
  • National Institute for Health and Clinical Excellence (2005) Improving outcomes in Children and Young People with Cancer. London: NICE

Source of Funding: N/A

Amount in Funding: N/A

Biography:

Dr Daniel Kelly Has been involved in cancer and palliative care nursing since 1984. Graduating from Edinburgh University Nursing programme he then undertook the Oncology Nursing course at the Royal Marsden Hospital and worked as a Staff Nurse and Charge Nurse in a Medical Oncology unit and St Columba’s Hospice in Edinburgh. Since then he has been a Lecturer in Cancer Nursing at The Royal Marsden and Senior Nurse for Research at UCL Hospitals in London. As a Reader at Middlesex University his current research interests include supportive care for teenagers and young adults; initiatives for men with cancer and education and workforce issues.