Survivorship Passport

Survivorship Passport: The basis for individual after-care

Highlighting the long-term consequences of cancer treatment in children and adolescents

Nowadays it is possible to cure about 80% of all children and adolescents with malignancies. However, it has been shown that two thirds of them have to contend with the long-term consequences of their disease and treatment. The nature of these consequences depends on the type of cancer in question and the patient’s individual history and course of treatment. Typical long-term consequences include:

  • Stunted growth
  • Delayed pubertal development that can even extend to infertility
  • Restricted function of organ systems such as hearing, kidneys, heart and lungs

Psychosocial problems, such as impeded reintegration, can also occur. A further key factor that impacts on after-care is the risk of developing secondary cancer.

After-care working group
Childhood Cancer Switzerland absorbed SPOG’s after-care working group in 2015. The working group was set up in 2012 by Childhood Cancer Support Switzerland, an association of parents in the German-speaking part of the country. Its aim is to improve the situation of former childhood cancer patients. One of the working group’s projects involved the introduction of survivorship passports. 

How survivorship passports can help identify long-term complications early
Not only do survivorship passports provide precise details of the patient’s medical treatment, they also provide specific, evidence-based recommendations for long-term after-care, i.e. from ten years after the end of treatment. This means that every survivor is given a personal schedule of precautionary examinations as part of their long-term after-care. A Swiss study has shown that survivors attach great importance to personal written information as well as oral briefings. A further benefit of passports is that patients are aware of the possible long-term complications, which this helps to reduce anxiety and stress (cf. Michel M, Christen S, Roser K. After-care in young cancer patients: a risk-based model for the prevention and early detection of long-term consequences. In: SZO 2018; 2:22-24.)

Testing the European Survivorship Passport in 2017
As part of a large-scale ENCCA 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, testing during 2017 showed that the product does not yet meet the needs of doctors and survivors. Working in partnership with the European Society for Paediatric Oncology SIOPE, Childhood Cancer Switzerland remains committed to driving the project forward to market readiness.

Passport for Care – a transitional solution
To ensure that survivors can nevertheless benefit from a passport and care recommendations, the after-care working group decided at the end of 2017 to recommend the US Passport for Care© to Switzerland’s nine treatment centres. This passport will already be in use in a majority of treatment centres during 2018. Children and adolescents who complete their treatment as of this point in time will receive a Passport for Care© along with accompanying treatment recommendations. 

Early after-care, i.e. after-care provided during the first five to ten years following the disease, is usually still provided in paediatric oncology outpatient clinics. The screening routines and examinations needed to discover and treat any long-term complications at an early stage are specifically geared to individual circumstances. Since most survivors are adolescents or young adults by the time ten years have passed, paediatric oncologists generally do not have the resources – and, in some cases, the skills – to continue providing after-care. As yet there is no systematic process in place in Switzerland for transitioning patients to the adult setting or transferring them to their GP. This lack of structure means that many survivors stop getting regular long-term after-care and no longer receive specific examinations or information. A study in Switzerland has shown that about a quarter of all adult survivors are still cared for by their former paediatric oncologist because no transition has taken place, and only 32% of adult survivors who experience long-term complications have a programme of regular long-term after-care. According to this study, adult survivors all have a strong but unfulfilled need for information, particularly on cancer, cancer treatment, after-care and long-term complications.