Psychosocial oncology, rehabilitation, & survivorship research

For these three research areas our recommendations are:

• Support methodological development for assessment of health-related quality of life.
• Develop tools to enhance communication with patients and shared decision-making (e.g. increasing patients’ access to their medical records via patient portals, development and testing of decision aids for selecting from available treatments).
• Establish international collaboration for developing survivorship-specific patient-reported outcomes in order to monitor the physical and psychosocial health and health-related quality of life of individuals in the post-treatment period. This is a prerequisite for establishing effective programmes to address the individual needs of cancer survivors (e.g. return to work, fertility, sexuality, reconstruction surgery, dental health, cognitive functioning, fear of recurrence, etc.).
• Develop, test and implement apps and wearable devices for effective follow-up monitoring and appropriate interventions.
• Support research to create a comprehensive overview of the negative consequences of a cancer diagnosis and treatment on physical, mental and social health in the short and the long term.
• Develop prediction models for side effects of treatments.
• Support long-term follow-up programmes notably for paediatric and young cancer patients to conduct large-scale, longitudinal, observational studies in distinct cohorts of cancer survivors to better understand their problems and needs.
• Establish and assess outcomes of guidelines to facilitate return to social health, enable reintegration in the workforce and alleviate financial and legal constraints (e.g. life insurance, mortgage).
• Identify health and social inequalities in the cancer survivorship population.
• Initiate research on the economic consequences cancer survivors and their relatives are facing. This should include both direct and indirect costs.
• Evaluate the need for and effectiveness of survivorship care models used in various healthcare systems.
• Conduct research to better understand the causes of differences and discrimination in the survivorship experience between countries and cultures, including financial services such as loans and mortgage.

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