Cancer literacy – Informing patients and implementing shared decision making

• Published in: Journal of cancer policy Vol. 35; p. 100375
• Main Authors: Buyens, Guy, van Balken, Michael, Oliver, Kathy, Price, Richard, Venegoni, Enea, Lawler, Mark, Battisti, Nicolò Matteo Luca, Van Poppel, Hendrik
• Format: Journal Article
• Language: English
• Published: England Elsevier Ltd 01.03.2023
• Subjects: Cancer; Cancer patient; Communication; Decision Making, Shared; Europe; Health behaviour; Health information; Health literacy; Health Literacy - methods; Humans; Neoplasms; Shared decision making; Europe; Health literacy; Cancer patient; Shared decision making; Health behaviour; Cancer; Health information
• ISSN: 2213-5383; 2213-5383
• DOI: 10.1016/j.jcpo.2022.100375

In order to tailor treatment to their needs, cancer patients are encouraged to be more active and engaged in their care decisions and to be autonomous yet collaborative with their healthcare professionals when it comes to aspects of their treatment in order to get better results. However, this can only happen after providing them with accurate information about cancer and the different treatment alternatives and their potential side effects. However, sharing robust data-based information is often hindered by exposure to misleading information through different media and online platform, where patients might come across unscientifically founded health practices. Increasing health literacy and cancer-specific literacy is essential to fight this negative trend. The idea is that more knowledgeable patients will be able to debunk more easily misinformation they encounter. This is also related to inequalities among cancer patients. Not only levels of cancer literacy within Europe are uneven across and within countries, but there are social groups that, due to specific social determinants, are systematically less informed and skilled regarding cancer care. In this paper an overview of gaps in addressing literacy issues, and the importance of health literacy to empower patients in their journey through treatment is delineated, concluding with some recommendations to improve cancer literacy in Europe. •Personal health literacy is the degree to which individuals can find and understand relevant health-related information.•Organisational health literacy is the degree to which organisations facilitate citizens to have health-related information.Access to reliable and understandable information is essential for an efficient and effective patient-centred healthcare.•Support and information provided to patients can be influenced by their health literacy and socioeconomic status. Patients must be more engaged and autonomous in their care decisions, while collaborative with healthcare professionals.•Given the imbalance in doctor - patient interactions, it is challenging for patients to have a full grasp of all the implications of their disease. Access to reliable, accurate information is essential to ensure patient's full grasp of the implications of their disease. Health literacy is essential to ensure patient's understanding of implications and long-term consequences of treatment.•ESMO guides for patients, ECPC booklet, ECO's European Code of Cancer Practice are initiatives that address health literacy. However, health literacy of cancer patients still needs much urgent attention and enhancement. Health literacy can no longer be approached separately but must be an integral part of the care pathway.