Over 14,000 patients aged 15-24 are estimated to be diagnosed with cancer in the EU each year. Teenagers and Young Adults (TYA) often fall down gaps between children's and adults cancer services. The specific challenges of providing optimal care to them are described, but we present a summary of recent progress. Progress to overcome these challenges is happening at different rates across Europe. We summarise the European national projects in this field but more recently we have seen the beginnings of European co-ordination. Within the EU FP7 European Network for Cancer Research in Children and Adolescents program (ENCCA) a specific European Network for Teenagers and Young Adults with Cancer (ENTYAC) has held a series of scientific meetings, including professionals, patients and caregivers. This group has proposed unanswered research questions and agreed key features of a high quality service that can improve outcomes for TYA with cancer, including the primacy of collaboration between adult and pediatric services to eliminate the gap in the management of TYA with cancer.
Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.
Priorities varied across and within healthcare professionals and young people, and were dependent on viewpoint and personal experience. This is an essential first step toward a fuller description of the benefit of specialist TYA cancer services and highlights the importance of consulting users in service development.
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