Survivorship Passport –
For Individual Follow-Up Care
The “Survivorship Passport” is an instrument for the early detection of late effects. It meticulously documents the medical treatment and makes concrete, evidence-based recommendations for long-term follow-up care. This starts around ten years after the end of the therapy. In the context of long-term prevention, every survivor receives an individual screening plan, the Survivorship Passport. Survivors also have the advantage of being informed about possible late effects, which can reduce anxiety and stress.
Overview of follow-up offers
So far, there is no uniform, comprehensive offer in the form of a “Survivorship Passport”, neither in Switzerland nor in other European countries. However, since there have been considerable developments, we would like to provide a brief overview here of the current situation in Switzerland and the various follow-up care formats:
Testing the European Survivorship Passport in 2017
As part of a research project, researchers and survivors worked together between 2011 and 2015 to develop the European Survivorship Passport. Childhood Cancer Switzerland decided to test the product with a view to using it in Switzerland. Sadly, the test phase in 2017 showed that the product does not yet satisfy the needs of doctors and survivors. Working in partnership with the European Society for Paediatric Oncology SIOPE, Childhood Cancer Switzerland remains committed to optimising this project.
Passport for Care and the COG guidelines as a transition solution
To ensure that survivors can still benefit from a passport and the corresponding screening recommendations, the follow-up care working group decided at the end of 2017 to recommend the US Passport for Care© and the associated long-term follow-up guidelines of the Children’s Oncology Group (COG) to the nine Swiss treatment centres. However, due to the varying infrastructures in the individual hospitals, the implementation varies greatly in practice. A personalised follow-up recommendation for survivors based on the COG guidelines is currently offered by the cantonal hospitals in Aarau, Liestal, Lucerne and Bern.
Transition: changing from paediatric to adult medicine
Early follow-up care – i.e. follow-up care provided during the first five to ten years following the disease – is usually still provided in paediatric oncology outpatient clinics. Here, consultations are carried out to ensure that a relapse (recurrence) and late effects are detected and treated at an early stage. After this period, most survivors are adolescents or young adults and are no longer treated by paediatricians. In Switzerland, however, the transition to adult medicine has not yet been organised systematically and is thus far from what anyone could call optimal. This leads to older survivors in particular not getting regular long-term follow-up care and no longer receiving specific examinations or information.
According to a Swiss study, about a quarter of all adult survivors are attended to by their former paediatric oncologist and only 32 per cent of adult survivors with severe late effects have a programme of regular long-term follow-up care. According to this study, adult survivors all have a strong but unfulfilled need for information, especially on the subjects of cancer, treatment, follow-up care and late effects. Childhood Cancer Switzerland is trying to fill this gap with the reliable information and counselling services offered by the competence centre, which is open to all survivors and their families as a central point of contact.
Follow-up care working group
The follow-up care working group was set up in 2012 by Childhood Cancer Support Switzerland with the aim of improving the situation of former childhood cancer patients throughout Switzerland. This also includes the introduction of the “Survivorship Passport” for the early detection of late effects. The follow-up care working group also acts as an important exchange platform for the regional follow-up consultations and for future projects.
Krankengeschichte in meiner Hand, Total Normal 36/13, 8-9 (German) PDF, 4,2 MB
Cancerworld, Passport to the future, 03-04/2014. Full article in English published in Cancer World
Innovative Solution for Follow-up, SIOPE (English) PDF, 77 KB