Transition to Adult Care & Survivorship

Cancer survivors want to return to a normal life. The reality of life after cancer can be nevertheless harsh, especially if they have suffered from this life-threatening disease during childhood. Two workshops took place this spring in Brussels and covered this important subject from different angles.i The first one was the 2nd Survivorship Summit (31 Mar -1 Apr 2016) organised by EORTC, the European Organisation for Research and Treatment of Cancer. This interesting event covered the existing obstacles to a good quality of life for survivors, including aspects that the general public may not be aware of such as discrimination in seeking work and the difficult access to insurance and mortgages. While most survivors don’t want to be reminded about their painful experience, the appearance of late side effects brings them back to their condition as patients, with all the related emotional burden. An original macroeconomics analysis of the repercussions of cancer on society as well as the description of the different phases of the cancer journey – where patient and survivor advocates would appreciate some more guidance – were some of the highlights from this 2-days event. jPaediatric cancer survivorship issues were discussed during the joint SIOPE-EORTC session on ‘specificities related to survivors of childhood and young adolescent cancer’ (co-chaired by SIOPE Board Member Professor Gilles Vassal). Quality of survivorship is a major goal in the SIOPE Strategic Plan, and the specificities of survivors‘ life after childhood cancer include a higher risk of morbidity, chronic impaired health conditions, late mortality, fertility issues, early aging and poor quality of life (psychosocial aspects). The initiative of the “Survivorship Passport” (currently at a prototype stage) received a lot of attention, as it could become in the future an innovative tool facilitating access to recommendations, follow up and care for childhood cancer survivors. The discussion focused on the dataset currently considered in the Passport, on its links with the current e-health initiatives and on the creation of long-term follow up specialised clinics in Europe. lOn 19 and 20 March, the Youth Group of the European Patients Forum (EPF) gathered in Brussels for a Roundtable on Transition to Adult Care (21 Mar 2016).  Jeroen te Dorsthost from the VOX survivors’ association in the Netherlands represented childhood cancers in this room full of young European patients with different disease types. The lack of information and guidance from healthcare systems, young patients being undermined by healthcare professionals, the risk of discontinuity in adherence to treatments and the fear of change were just some of the common themes debated in the room. The Youth Group acknowledged that the consultant-patient relationship and diagnoses can differ greatly in adult care compared to children’s care. They also stressed the lack of a legal and financial framework for transition, where clear leadership and the role of a potential ‘Transition Coordinator’ need to be defined. Local patient organisations should also be more involved in the transition process, together with the need for peer-to-peer support and specialist care for young patients. More information: