How Do Teenagers and Young Adults with Cancer Experience Their Care? A European Survey.

Abstract

To gather the perspectives of Teenagers and Young Adults (TYA) with cancer across Europe on the care they received and research priorities for TYA services. A questionnaire was designed by TYA oncology specialists in the United Kingdom and translated into 11 other European languages. It was disseminated to TYAs in various European countries with the help of collaborators in the European Network for Cancer in Children and Adolescents (ENCCA). Free text responses were analyzed using a thematic approach. 301 participants representing 25 countries were entered into the analysis. Only 9% of the sample had experience of a ward solely for the use of TYAs. Two thirds of participants agreed with the need for TYA-specific services. Participants reported that important aspects of TYA care included access to psychological care, youth workers and physiotherapists, higher levels of staffing, and healthcare workers who understand the needs of TYAs and communicate effectively. The most frequently endorsed areas for future research were "monitoring after treatment," "communication between professionals and young people," "research about cancer," "fertility preservation," and "back to work/school." European collaboration between TYA and professionals in delivering this project has been feasible. This study contributes to developing a healthcare culture that values the perspectives of service users. It has provided an insight into what TYAs perceive as important aspects of their care, how they think TYA care can be improved, and what they consider to be important areas for research.