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H P.01 THE ROLE OF A TEENAGE AND YOUNG ADULT ONCOLOGY RESEARCH NURSE IN IMPROVING ACCURAL OF PATIENTS INTO CLINICAL TRIALS



Abstract

Improvement in survival for teenagers and young adults (TYAs) has lagged behind those of children and adults, (Stiller et al 2006). In seeking explanations investigators have focused on two main factors. Firstly, the low accrual of TYAs into clinical trials (Newburger et al, 2002), and secondly the lack of appropriate multidisciplinary care (Stevens, 2005).

Data from the UK Office of National Statistics confirms this with 70% of paediatric patients being entered into a clinical trial compared to only 20% of 15–24 year olds. In 2007 the Teenage Cancer Trust (TCT) asked over 200 14–25 year olds with cancer if they had been offered a clinical trial (TCT survey results, 2008). Of the total cohort only 30% reported that they had been given the opportunity to enter a clinical trial. The National Cancer Research Institute (NCRI) established a Teenage and Young Adult Clinical Studies Development Group in 2005 to address the issues surrounding the accrual of TYAs into clinical trials.

At a specialist Teenage Cancer Trust Unit in the UK a TYA Clinical Research Nurse was appointed in May 2008; in order to improve TYA accrual into clinical trials. An audit is currently been undertaken to examine present data of clinical trial entry and retrospective data from 2006 and 2007. The focus of the audit is on patients aged 16–24 years with a bone or soft tissue sarcoma being treated in one TCT unit in the UK.

The audit will examine whether the appointment of a TYA research nurse has influenced the accrual of TYA patients into clinical trials. The paper will focus on the particular difficulties and challenges with recruiting TYA patients and the developing role of the TYA Research Nurse in influencing practice. It is essential that improvements are made with regard to trial entry for this unique age group and the TYA Research Nurse may play a vital role in this in the future.

Correspondence should be addressed to Professor Stefan Bielack, Olgahospital, Klinikum Stuttgart, Bismarkstrasse 8, D-70176 Stuttgart, Germany. Email: s.bielack@klinikum_stuttgart.de