Mariken Stegmann

Introduction  The objective of this thesis is to analyse communication with, and about, patients who have  cancer, focusing on the role of the general practitioner (GP). It was anticipated that the  findings of this analysis would then allow me to make suggestions to improve the  communication process. The results of two studies form the basis of this analysis: 1) OPTion,  which focused on shared decision‐making (SDM); and 2) PION which focused on information  exchange between doctors. In this first chapter I will give an introduction to the topic. After  describing the epidemiology of cancer and the effects of cancer treatment, I will outline the  basics of shared decision making and the role of the different healthcare providers in the  oncological care at this moment. Thereafter I will shortly describe the research projects that  form this thesis.   In chapter 2‐7 the research projects will be presented more extensively and in chapter 8 I  will summarise all findings and present the implications of this thesis for the communication  process.  Epidemiology of cancer  In recent years, cancer has become the leading cause of death in high income countries  and  it is now Globally the incidence of cancer is estimated to be 18.1 million cases in 2018, with  9.6 million cancer deaths. 1  In European countries, these numbers are 3.9 million and 1.9  million respectively. 2  For an individual, this means that there is a lifetime risk of about one in  three for getting cancer and one in six for dying from cancer, responsible for approximately  55% of deaths. 3 . The most common cancer sites in European countries, excluding non‐ melanoma skin cancer, are breast cancer, colorectal cancer and lung cancer. 2  The  epidemiology of these cancer types is described in the appendix. Like almost all other types  of cancer, these cancers are more common among older people (>65 years).  The overall  cancer incidence is 11‐fold higher in these persons than in younger people. 4  Approximately  60% of all cancers and 70% of all cancer deaths occur in people older than 65 years. 4  This  proportion is expected to increase even more in the coming years because of an ageing  population. 1  Cancer may cause several physical symptoms depending on the localisation of  the tumour  as well as side‐effects like fatigue. Furthermore, cancer is also associated with  problems like anxiety, depression and distress. More information about the symptoms of  breast cancer, colorectal cancer and lung cancer is provided in the appendix. Both physical  and psychosocial symptoms can have important effects on the quality of life of patients with  cancer. However, not only the disease itself, but also cancer treatment can have a major  impact on patients, both in a positive and a negative way.  Effects of cancer treatment  The main aim of anticancer related treatment is to extend life. For curative treatment, the  aim is to give patients the same life expectancy as non‐cancer patients. For palliative  treatment, extending life means improving survival compared to patients without treatment,  which can be expressed as a higher median survival time or a higher 1‐year survival rate.  However, cancer treatments may also have other positive effects through the reduction of  physical symptoms such as reducing dyspnoea by chemotherapy in lung cancer.   Cancer treatment can also have negative effects. Common side effects include fatigue (all  treatments), pain (surgery, chemotherapy) and other physical symptoms (e.g. nausea due to  chemotherapy; early menopause due to hormonal therapy; diarrhoea due to chemotherapy,  targeted therapy and immunotherapy; infection due to surgery and immunotherapy). 5,6  In  8 Chapter 1