This new guide, co-piloted by Unicancer in the framework of the iPAAC joint action, proposes recommendations on a subject that is still little known, but which nevertheless affects many people and is therefore very important to study: cognitive impairments in people who have received oncological treatment.
Despite the completion of oncology treatment, many people experience long-term symptoms and side effects that may include reduced cognitive abilities, including problems with attention and memory. These problems can affect their daily lives after treatment, as well as their employment, and also represent a socio-economic issue for public authorities. It is very important that all patients and (ex-)patients have access to long-term care and support measures for these disorders: therefore, a study was carried out by experts from the Unicancer network and Antares consulting in order to propose practices and tools to improve the knowledge and care of cognitive impairments.
The study is part of the European joint action iPAAC (Innovative partnership for action against cancer) which aims to support EU countries in implementing innovative policies in the fight against cancer. More specifically, the objective of Work Package (WP) 4 is to build a roadmap for the implementation and sustainability of these policies, and one of the major challenges identified by EU Member States is that of patient support after cancer. It is in this context that the National Cancer Institute (INCa) and the Belgian Public Health Institute (Sciensano) have launched a call for tender on this topic.
The guide, which has just been published, summarises the results of the study and looks in more detail at the following subjects: information, identification and objectification of disorders; promotion of the various types of treatment and follow-up; return to work; identification and training of professionals; development of research.
Composition of the project team
The project was led by a team combining methodological expertise in project management and high-level scientific expertise of international renown. The scientific coordination was ensured by Pr Florence Joly (oncologist – François Baclesse Centre, FCCC of Caen, Unicancer), specialist in cognitive impairments, and that of the project by Mrs Samah Ben Abdallah (Director Healthcare International Partnership – health consultancy). The team of scientific experts of the Unicancer network was composed as follows:
- Centre François Baclesse (FCCC of Caen, Unicancer): Dr Marie Lange (Psychologist specialised in neuropsychology), Giulia Binarelli (Psychologist specialised in neuropsychology), Antoine Boué (Psychologist specialised in neuropsychology), Mylène Duivon (Research Officer);
- Centre Henri Becquerel (FCCC of Rouen, Unicancer): Dr Johann Le Fel (Psychologist specialised in neuropsychology);
- Gustave Roussy (FCCC of Villejuif, Unicancer) and CHU of Bordeaux: Dr Cécile Charles (Psychologist);
- CHU Bicêtre: Isabelle Hardy-Léger (Psychologue spécialisée en neuropsychologie);
- Unicancer coordination : Anne-Laure Martin (Oncology health data and partnerships director).
Methodology and execution of the study
Given their expertise on the subject, the Unicancer experts proposed to work more specifically on the issue of cognitive impairments in adults after treatment for cancer outside the central nervous system. The study is based on a three-phase methodology: I) documentary research (based on scientific and grey literature) and interviews with experts and institutions in France, Europe and internationally; II) drafting of the guide and development of recommendations; III) organisation of an expert consensus workshop and a dissemination conference.
The guide represents a synthesis of the most important issues to be taken into account by public authorities in order to improve the quality of life of patients after their treatment. It also represents a rich resource integrating examples of practices, numerous references, a bibliography, contacts, examples of working documents, etc. The practices and resources identified are not exhaustive, but the study has demonstrated the interest and the need to be able to propose this first approach at European and national level.
A European guide to be used and adapted in each member country and by each stakeholder
The work has been integrated into the final iPAAC report, which will serve as a basis for the development of new actions in the fight against cancer at the European level. Above all, this guide is intended to be practical and to be used by the entire community concerned by the problem in each Member State. This includes: European and national public authorities; health professionals; health institutions; institutions; patients’ associations and patients themselves and their families.
It is through a vision and a decompartmentalised approach that the authors of this book hope to contribute to improve the quality of life of cancer patients. More specifically in France, this guide can be used in the context of the implementation of the Ten-Year Cancer Control Strategy policy, particularly with regard to the organisation of supportive care or in the context of maintaining and reintegrating cancer patients into the workforce.
The authors of the guide would like to thank INCa and Sciensano for having made this rich and important study possible, as well as all the French, European and international experts consulted, for the quality of their contributions. Without them this study would not have been possible.
Read the guide (in English)
See the annex of the guide (in English)
Get to know the iPAAC Joint Action and its WP 4
• Healthcare International Partnership – Samah Ben Abdallah