Research priorities for young people with cancer: a UK priority setting partnership with the James Lind Alliance.

OBJECTIVES: To conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population. DESIGN: James Lind Alliance Priority Setting Partnership. SETTING: UK health service and community. METHODS: A steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop. PARTICIPANTS: Young people aged 13-24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population. RESULTS: Two hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of 'out of scope' questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care. CONCLUSIONS: We have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.

Proceedings of a workshop: bridging the gap in care and addressing participation in clinical trials.

The purpose of this workshop was to examine possible strategies for increasing participation by adolescent and young adult cancer patients in clinical trials. Three key established issues set the framework for this discussion: 1) In the United States, individuals in the 15-40 age group are less likely than either children or older adults to be referred to a comprehensive cancer center. 2) Enrollment in therapeutic clinical trials is unacceptably low among adolescent and young adult patients everywhere this has been studied, including United States, Canada, and United Kingdom. 3) Cancers that occur in patients in this age group with particular frequency (notably malignant lymphomas and bone tumors) have relatively long intervals from symptom onset to diagnosis (POG 9082). This may reflect both distinct biologic features of these diseases and a real gap in health care.