General discussion 187 6 includes an observational study in 321 patients referred to a palliative care consultation team who had used a LGP between 2013 and 2018. We found that patients reported highest median symptom burden for Fatigue (7; range 4-8) and Less appetite (6; range 3-9). Most information needs were about Fatigue (68.0%), Possibilities for managing complaints in the future (68.0%) and Complaints expected for the future (67.3%). Patients had significantly more information needs about symptoms for which they reported clinically relevant burden, or which they had prioritised. However, patients who reported mild symptom burden, also regularly indicated that they wanted information about that symptom. Patients in the late palliative phase more often wanted information about how they can manage care at home or in a hospice, while patients in the early palliative phase wanted more information about how treatment can affect their quality of life. Objective 6: To evaluate and further develop the question prompt list of the LGP to prepare the question prompt list for use by generalist palliative care clinicians. In Chapter 7, we performed a mixed-methods study in 2017-2018 to evaluate use of the question prompt list of the LGP and to further develop it using 35 interviews with patients, family, and generalist clinicians and 32 audiotaped consultations. Patients, family, and clinicians regarded the question prompt list as relevant. Patients and family explained that using the question prompt list before the consultation structured their thoughts and helped them ask their questions during consultations. It supported them to regain a sense of control. Although using the question prompt list could evoke strong emotions, they indicated that their real challenge was to accept being a patient in the palliative phase. Clinicians found that the question prompt list could support them as a reminder of discussion topics. During consultations in the hospital with palliative care consultants, topics patients and family had indicated were discussed frequently, but also topics aimed at (re)organising life at home were discussed. 8.2 REFLECTIONS ON THE USED METHODOLOGIES In Chapter 2, a cross-sectional study was conducted to acquire an overview of the status of education of end-of-life care in Dutch undergraduate medical curricula. A checklist including essential domains of end-of-life care education was established based on literature review to assess the national blueprint on medical education and to form structured questionnaire to send to study coordinators. Using these methods, results of this study represent the state of education on end-of-life care in Dutch medical education in the academic year of 2015-2016 making use of internationally endorsed domains. Some participants indicated it was difficult to point out which curricular parts 8
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