For Survivors

This information is intended for survivors of childhood, adolescent and young adult cancer that are interested in the PanCareFollowUp Care intervention. If you are a health care provider, you can find more information here.

The problem: late effects of childhood, adolescent and young adult cancer treatment

Nowadays more than 80% of children, adolescents and young adults treated for cancer will become long-term survivors. There are currently at least 300,000 survivors across Europe, and this number is growing by 12,000 survivors each year. Maybe you’re one of them!

Survivorship may come at a price: the treatment (for example, chemotherapy, stem cell transplant, radiotherapy and/or surgery) that has cured your disease may have many side effects. Some occur years to decades after treatment. Up to 75% of survivors may have to deal with the long-term consequences of their cancer treatment. These so-called ‘late effects’ can impact health, social and emotional wellbeing, or cognitive functioning. The burden of these late effects varies from survivor to survivor.

The individual risk for certain late effects depends on the type of treatment you received, your age at the time of diagnosis, your lifestyle and possibly genetic factors. In addition to affecting your daily life and your family, these late effects can also affect society, through increased healthcare consumption or educational support needs.

This is why survivors are in need of adequate long-term follow-up care. In order to identify and treat emerging late effects as early as possible and to keep an eye on existing late effects, it is important to regularly carry out the recommended follow-up examinations during long-term follow-up care. With such surveillance, emerging late effects can be detected and treated at an early stage, and some can even be prevented.

13 life and health after childhood cancer

Examples of possible late effects

The solution: survivorship care to prevent, identify and treat late effects

It is important that survivors can access long-term follow-up care throughout their life span. Survivorship care is focused on health education, prevention and surveillance to detect late effects at an early and treatable stage. Adequate follow-up care for (adult) survivors can help you deal with late effects.

Unfortunately, follow-up care clinics are lacking in a lot of European countries. This means that many of you may not be aware about the potential risks for developing late effects. The information you need may not have reached you. However, there are international evidence-based guidelines available for surveillance of many such late effects, so this lack of care should and can be solved.

PanCareFollowUp LogoAnd this is where the PanCareFollowUp project steps in: this EU-funded multi-stakeholder project aims at developing a blueprint on how to best deliver follow-up care across Europe.

PanCareFollowUp Project

PanCare, together with SIOP Europe, CCI Europe and a consortium of eleven health care and research institutions, is developing and implementing the PanCareFollowUp Care Intervention to improve survivorship care across Europe. The key elements of the PanCareFollowUp Care Intervention are guideline-based person-centred care, a Treatment Summary and a Survivorship Care Plan.

The basic principle in person-centred care is that you are more than your cancer history. So, person-centred care starts with your individual experience. This means that you become a partner in your own healthcare and make shared decisions with your healthcare provider.

Your experience forms the basis for a Survivorship Care Plan, along with other supplementary examinations. The PanCareFollowUp Care Intervention aims to facilitate and empower you to take control over your life and survivorship care.

PanCareFollowUp Care Intervention

The PanCareFollowUp Care Intervention represents a person-centred approach to survivorship care, which has been developed and implemented in the Netherlands since the 1990s. The survivorship clinics in the Netherlands have multidisciplinary teams and apply a person-centred care model, where care is based on the currently available surveillance guidelines. As part of the PanCareFollowUp project, the PanCareFollowUp Care Intervention will be implemented at one clinical site in Belgium (Leuven), Czech Republic (Brno), Italy (Genova), and Sweden (Lund). Over two years, each centre will enrol 200 survivors to take part in a study.

The PanCareFollowUp Care Intervention consists of a pre-visit Survivor Questionnaire, a clinic visit and a follow-up call, after which a personalised Survivorship Care Plan is developed. This document includes a Treatment Summary with your cancer history and the details of which treatment you received. The Survivorship Care Plan will give you a clear insight into what care is recommended based on your history and follow-up guidelines.

The effects of the PanCareFollowUp Care Intervention will be assessed by three additional study questionnaires for survivors:  one questionnaire before the clinic visit and two after the clinic visit.

eHealth Lifestyle Intervention in the Netherlands

Within the PanCareFollowUp project, an eHealth Lifestyle Intervention will be conducted. The presence of lifestyle risk factors, including smoking, alcohol abuse, physical inactivity and unhealthy dietary habits, can increase the already heightened risk for chronic health conditions in childhood cancer survivors. To reduce these risks, guidelines recommend that cancer survivors participate in regular physical activity and have a healthy diet.

The PanCareFollowUp eHealth Lifestyle intervention aims to promote the adoption of healthy lifestyle behaviours in survivors. It supports survivors to change unhealthy lifestyle behaviours on their own, increasing the chances of success. The intervention is delivered using both the concepts of person-centred care, as well as motivational interviewing.

The two participating centres (Utrecht and Nijmegen) will each enrol 30 survivors to take part in this eHealth Lifestyle Intervention.

More information

If you want to learn more about the PanCareFollowUp project, you can contact us!

The four participating centres of the PanCareFollow Up Care Intervention are:

Skånes Universitetssjukhus, with Lund University in Lund, Sweden

Gaslini Ospedale, in Genova, Italy

University Hospital Leuven, with KU Leuven in Leuven, Belgium

St. Anne’s University Hospital, in Brno, Czech Republic

The two participating centres of the PanCareFollowUp eHealth Lifestyle Intervention are:

Radboudumc, in Nijmegen, the Netherlands

Princess Máxima Centre, in Utrecht, the Netherlands

PanCareFollowUp in context

CCI Europe is the European branch of Childhood Cancer International (CCI) and a partner in the PanCareFollowUp project. CCI Europe is the biggest pan-European childhood cancer parents’ and survivors’ organisation. It represents childhood cancer parents´ and survivors´ groups and other childhood cancer organisations. It unites all 67 European CCI member-organisations in 30 countries to share knowledge and experiences, offers education and disseminates information, advocate for the rights and needs of childhood cancer patients and survivors; raises awareness about childhood cancer, actively engages and partners in research and development, and provides assistance and guidance to establish local/national organisations and groups.

PanCare, the European network of professionals, survivors and their families for survivorship care, aims to reduce the frequency, severity and impact of late side‐effects of the treatment of children and adolescents with cancer. PanCare is working to achieve equity of access to care for childhood cancer survivors across Europe, to perform collaborative research and to act as a resource of research-based information concerning all late side‐effects of cancer treatment.

PanCare has initiated several research projects to improve survivorship care.

The PanCareSurFup project established a European network and database of 80,000 survivors to study second malignancies, cardiac disease and late mortality and developed a guideline on the organization of long-term follow-up care.

The next project, PanCareLIFE, studied the impact of treatment on quality of life, female fertility, and hearing, and developed two guidelines for fertility preservation.