Under-representation of teenagers and young adults (TYAs) in cancer clinical trials is an internationally recognised problem.
Compared to children and older adults these cohorts of patients have gained the least in improvements in survival from cancer. This may, at least in part, be related to poor accrual to clinical trials. The reasons which underlie low trial participation by TYA have rarely been addressed by researchers and there is a lack of information of the perceptions about trial entry of TYA themselves or of the healthcare professionals caring for them.
The team, led by Ms Susie Pearce, set out to investigate this area in young bone cancer patients specifically, in a study known as the ‘Perceptions of Patients and Professionals about Participation in Clinical Trials (BCRT PoPP) study’. Interviews were conducted with 21 young people aged 15 to 24 years and 18 health professionals caring for these young people in order to find factors that influence their participation. Factors highlighted were the importance and design of the clinical trial, communicating with young people in an age-specific manner, using language young people are comfortable with, and ensuring support from family, peers and professionals. The study also found that the environment the teenager or young adult was being treated in was important, as was the involvement of a clinical nurse specialist.
This project won the prestigious Royal College of Nursing Excellence in Cancer Research Award, after a competitive interview and judging panel rounds in London, and led to many publications and presentations of the findings; including one from Dr Verna Lavender at the Bone Cancer Research Trusts ‘Bone Cancer Conference 2017’.