Mariken Stegmann

SDM, including the people who should be involved, the method, and the effects, highlighting areas in which this thesis may add to the existing literature. Shared decision making as a team To have a good SDM process, it is important to involve appropriate partners. Thus, I will first discuss the roles of the patient and health care providers in primary and secondary care, before taking a look at the collaboration between those professionals. Patients and loved ones Although it is accepted that patients should feel empowered to participate in SDM, the available literature indicates that older patients often feel no empowerment. 6,7 However, the OPTion study (Chapter 4) showed that DSE was high in older Dutch patients with non ‐ curable cancer, possibly due to the generally high satisfaction with care reported in the Netherlands. 8 Most patients also reported a high level of social support and visited medical specialists or GPs with a partner or another close relative, which may have further contributed to a sense of empowerment. Research by the Dutch Federation of Cancer Patient Organisations (NFK) has supported the importance of social support. In an online survey of 1,104 patients with non ‐ curable cancer, they showed that most respondents preferred to talk about end of life issues not only with their GP (76%) and specialist (63%) but also with their partner (80%) and children (65%). 9 Secondary care In most cases, the medical specialist is responsible for both diagnosing the patient with cancer and initiating treatment, and in some instances, several specialists may need to be involved (e.g., an oncologist and a radiotherapist). Fortunately, patients in the Netherlands are generally very satisfied with this care. 8,10 However, when told that their cancer was incurable, patients in the NFK survey indicated that emotional support was mediocre (mean score 6.5 ± 2.64 on a scale from 1 to 10). Among the patients who did not receive further support from the hospital (37%), most (59%) expressed a clear need for support. This was stated as a need for one key contact (55%; typically a specialist nurse), support for family and loved ones (43%), or information or advice regarding psychological symptoms (43%). 9 In another NFK survey, seeking the opinions 4,763 Dutch patients with cancer had of specialist oncology nurses, most patients (77%) had required contact, and when received, rated the care with a mean score of 8.0 on a scale from 1 to 10). 11 Primary care GPs have an important role in the Dutch health care system. Traditionally, the GP offers long ‐ term accessible care with greater focus on context, but demographical shifts in recent decades may have influenced the closeness of this relationship. On the one hand, GPs are working part ‐ time more often, which can decrease the continuity of care; on the other hand, patients tend to move and switch GPs more often. In 2019, The Dutch College of General Practitioners (NHG) redefined the core values of the GP to continuity of care, generalism, and person ‐ centeredness, 12 adding collaboration as a fourth value, 12 consistent with the wishes of patients. 9,13 In an NFK survey, 59% of respondents indicated they had a need for GP contact and rated the care they received with a mean score of 7.4 on a scale from 1 to 10. 11,14 A position paper by the NHG about the role of primary care in oncology emphasised that GPs are often concerned with the care of patients with cancer, but it was stated that 108 Chapter 8