We are approaching the end of the project
PanCareSurFup (the PanCare Childhood and Adolescent Cancer Care and Follow-up Studies) and we cannot but be satisfied with what partners of this EU project could achieve during these past years. This consortium of partners (mainly researchers and data providers) from 11 countries had assembled the largest cohort ever of 5-year childhood cancer survivors (84,000) to ascertain the incidence of subsequent primary neoplasms and cardiac diseases as well as the causes of late deaths.
The progress made in the treatment of childhood cancer since the 1960s has been incredible and, thanks to the widespread use of more sophisticated chemotherapy and radiotherapy treatments and stem cell transplantation, led to a spectacular increase of survival rates in the European region. However, only recently the issue of adverse health consequences of treatment and the need to be mindful of long-term side effects becomes an important factor to be considered at the time of treatment and beyond.
The reason of the creation of PanCareSurFup was indeed to establish a common framework to ensure an effective follow-up of every survivor of childhood cancer on the long term, by investigating every possible late side effect of cancer treatment and ensuring that these will be taken into consideration both by GPs and by the lay public. The work was divided into different Work packages: “Data Collection and Harmonization”; “Radiation Dosimetry”; “Cardiac disease”; “Subsequent primary neoplasms”; “Late Mortality”; “Guidelines, transition and follow-up”; “Dissemination and Training”; “Coordination and Management”.
One of the main outcomes from this project is the “Survivorship Passport” initiative. It is common experience among long-term survivors that information is not easily accessible regarding treatments that they may have received several years ago. Moreover, because of the lack of information about possible long term complications of cancer treatments, it sometimes happens that they receive from their healthcare provider incorrect counselling regarding clinical conditions and/or screening procedures to monitor/prevent possible late complications.
Trying to tackle this problem, the Passport is being developed via the EU-funded projects
ENCCA,
ExPO-r-Net and
PanCareSurFup. This document should be given to the individual patient after the elective end of therapies, and it contains information about the cancer and the treatments received, providing advice and guidance on patient-specific long term follow-up of possible late effects. Its structure is based on a database designed to contain all relevant information (e.g. the clinical and biological characteristics of the tumour, information on cumulative doses received of chemotherapy and radiotherapy as well on surgical interventions). In parallel to the development of the Passport, organ-specific guidelines for long-term surveillance were developed by the consortium in collaboration with the International Guidelines Harmonization group (IGHG). As soon as recommendations become available, an algorithm is implemented in the Passport to allow the “triggering” of the specific recommendations – based on the survivor treatment exposure and the risk factors identified – and the system automatically generates a personalised document containing the treatment summary as well as recommendations for long-term screening.
These documents, written in lay language and already translated in several European languages, will be made available both in a printable version as well on a secure password protected website and smartphone app. Although this initiative has not been yet finalized in all its aspects, it already raised high expectations and two European countries (Austria and Switzerland) have already introduced references to the Survivorship Passport in their national cancer plans. Partners are currently working hard to ensure that the Passport will be successfully implemented in clinical practice.
This successful project demonstrated that “cure is not enough” and that it is crucial to always monitor the situation of every survivor, raising awareness on all possible long term consequences. Future research needs to feed into optimized guidelines for health screening of survivors and develop personalized and targeted therapies that will reduce risks to suffer from late effects. Shared decision-making between survivors and clinicians is another crucial point, empowering them to have access their own data and to be responsible for their own follow-up. One of them, speaking at the project’s European Conference (23-24 May 2016, Brussels), proposed to change the name from “survivor” to “resilient”, someone who managed to overcome a very difficult challenge. Initiatives like PanCareSurFup can support these brave people after such a challenge, to have a normal life.
More information:
