Evaluating end of treatment care of young people with cancer

Background: Existing literature implies there may be gaps in post-treatment support for young people with cancer. This service evaluation explored the needs and experiences of young people when ending cancer treatment in a UK children's hospital to inform service provisions. Methods: Semi-structured interviews were conducted with nine young people, aged 13-18 years, who had finished active cancer treatment and were receiving follow-up care. The data was analysed using thematic analysis. Results: Four main themes were developed: being in the dark (i.e. limited awareness of what happens when treatment ends); separation from the hospital (i.e. the loss of valued support from staff); consequences of cancer (i.e. managing ongoing psychological and physical effects; and getting back to normal life (i.e. shifting from hospital to everyday life). Conclusions: Recommendations for improving clinical practice were made. Greater preparedness for ending treatment could be achieved by clearly setting out ongoing care arrangements, providing resource packs, having opportunities to mark the end of treatment, and offering peer support. To identify specific post-treatment needs, there should be an end of treatment multidisciplinary review and space for young people to share how they are feeling in follow-up medical appointments.