Being diagnosed with head and neck cancer has major impact on patients’ lives. Treatment is often invasive and interferes with vital functions, and 5-year overall survival rates remain around 50-60%. Regarding decision making, this results in a delicate balance between survival benefit and deterioration in quality of life. All patients have similar questions at some point during their disease trajectory: “What are my chances to survive?” and “Do I actually have a choice?”. Proper communication on these matters is therefore utterly important. This thesis contributes to the further implementation of prognostic counselling, shared decision making and value based healthcare in head and neck oncologic clinical practice. Qualitative and retrospective research showed patient preferences regarding prognosis, calculation and interpretation of individual prognosis. Two individualized prognostic models for laryngeal and oropharyngeal cancer as well as a guideline on how to communicate this prognostic information were developed. And to include patients’ preferences and priorities in the years after treatment, an electronically patient reported outcomes based clinical support system “Health Care Monitor” is presented which empowers patients and increases patient centered care during follow-up of head and neck cancer. Having access to the right information, at the right time, delivered in the right way, leads to an increase in patients’ abilities to take a more active role in their decision making and healthcare in general. This patient empowerment is really achieved when patients realize they can improve their medical outcomes by taking responsibility for their own healthcare decisions in partnership with their healthcare providers.

prognostic models, shared decision making, value based healthcare, personalized counseling, quality of care, communication
R.J. Baatenburg de Jong (Robert Jan) , M.P.J. Offerman (Marinella)
Erasmus University Rotterdam
978-94-6361-448-1
hdl.handle.net/1765/128371

Dronkers, E.A.C. (2020, September 30). Prognostic Models and Personalized Counselling: Towards Shared Decision Making in Head and Neck Oncology. Erasmus University Rotterdam. Retrieved from http://hdl.handle.net/1765/128371