Mariken Stegmann

Introduction The objective of this thesis was 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 chapter, I will first summarise the main findings of these studies, before highlighting their relevance in the context of SDM and discussing how they relate to the findings of other researchers. Finally, I will describe some important methodological challenges inherent to research into communication in oncology and outline the implications of the present results for health care, education, and further research. Summary of Main Findings The protocol for the OPTion randomised controlled trial (RCT) was described in Chapter 2, the Outcome Prioritisation Tool (OPT) itself was described in Chapter 3, and the results of the RCT were presented in Chapters 4 and 5. The PION study is then summarised in Chapters 6 and 7. In Chapter 3, the OPT instrument and its use were described in detail with a review of the existing literature about the instrument. The OPT was developed to facilitate the discussion of goals and preferences in an encompassing, non ‐ disease ‐ specific way. The OPT is used in both primary and secondary care to facilitate treatment decisions in different health care settings. However, the available scientific literature about the tool was limited, with the review yielding only a study protocol, two articles about its development, and four articles describing its use. All studies were performed among older patients, and most of the included patients rated maintaining independence as their most important goal. Nevertheless, the tool had been shown to be feasible for both patients and health care providers. We reported the results of the OPTion RCT in Chapter 4. We randomly assigned older patients with non ‐ curable cancer to either care as usual or the OPT ‐ based intervention, which involved an OPT ‐ facilitated conversation with the GP at some point between diagnosis and treatment decision. The score on a decision self ‐ efficacy (DSE) scale, which ranged from 1 (no empowerment) to 100 (full empowerment), was used as the primary outcome measure. All questionnaires were completed at home, after the consultation with an oncologist during which a treatment decision was made. Symptoms of fatigue, depression, or anxiety were also measured as secondary outcomes. Of interest, although there was no difference in patient empowerment between the OPT (n = 48; DSE 86.8 ± 18.2) and control (n = 58; DSE 84.2 ± 17.6; p = 0.47) groups, non ‐ significantly fewer patients in the OPT group had low empowerment (17.0% vs 23.0%; p = 0.50). However, patients in the OPT group did have significantly lower mean anxiety scores (6.0 ± 4.6 vs 7.6 ± 4.4; p < 0.05) and less fatigue rated as mild (57.6% vs 72.1%; p = 0.05). Overall, 44.8% of patients indicated that the OPT ‐ facilitated conversation helped them make a treatment decision and that 33.3% of GPs indicated that they gained new insights from the conversation. In Chapter 5 we presented the results of OPTion2, a follow ‐ up study of 29 patients from the intervention group of the OPTion study. We descriptively analysed goals discussed by them 106 Chapter 8