End of Treatment Study: Information and Support Needs of Young People with Cancer at the End of Active Treatment
- Rachel Taylor, Lorna Fern, Louise Soanes, Ana Martins, Sarah Lea: University College London Hospitals NHS Foundation Trust
- Sue Morgan: Leeds Teaching Hospitals NHS Foundation Trust
- Maria Cable, Michael Whelan, Coventry University.
Funded by Teenage Cancer Trust
What were our aims?
The end of treatment is known to be a period of high stress in young people’s cancer timeline but little is known about young people’s information and support needs at this time. The aims of this study were to:
identify what was already known about young people’s end of treatment experience
map the models of care currently provided in the UK when treatment ends
identify young people’s information and support needs when treatment ends
determine whether a current model of care fulfils young peoples’ information and support needs
- co-design, with stakeholders, draft recommendations based on the results of the study.
What did we do?
This was a multi-stage, mixed methods study exploring the end of treatment experience from the perspective of young people and the healthcare professionals providing care, incorporating co-design to develop the standards and recommendations that can inform future practice and research. The study was conducted from January 2018 to December 2018, over four phases (Figure 1).
Figure 1: Stages of the End of Treatment study
(HCP: healthcare professional)
What did we find?
The review highlighted that young people were under-prepared for the unpredictable and ongoing nature of the physical, psychological and social issues faced at the end of treatment. Enabling inclusion within their relevant social and educational peer networks needed to be prioritised during treatment to help young people prepare/cope at the end of treatment. Timely, structured and equitable information and support was needed to prepare for treatment ending and subsequent reintegration to ‘everyday’ life.
This review is now published. To read the full, open-access paper, please visit this link.
Phases 2, 3 and 4
Data related to young people’s experiences of the end of active cancer treatment, together with the overall findings of this study, will be available in the near future.