Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research.

Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.

Multi-Professional Perspectives on Adolescent and Young Adult Oncology Across Europe: An e-Delphi Survey.

The aims of this article are to describe the ongoing development of adolescent and young adult (AYA) cancer services within the European Union (EU), and to develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 to April 2015. Consensus was defined as >80% agreement ("agree" or "strongly agree"). Sixty professionals participated in round 1, 106 in round 2, and 61 in round 3. Twenty-six countries were represented across all rounds. Consensus was achieved for: the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People, and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within AYA cancer care. European professionals with expertise in AYA cancer care reached consensus on key elements of care for this group. The optimal AYA age range remained an elusive topic on which to agree. The broad engagement and interest in AYA cancer across the EU through the European Network for Cancer in Children and Adolescents (ENCCA) network was also demonstrated.

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

PURPOSE: 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. METHODS: 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. RESULTS: 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." CONCLUSION: 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.