General discussion 201 care PROM to patients and family can therefore be considered as a proactive action. In Chapter 6, the Leiden Guide on Palliative care, which includes the Utrecht Symptom Diary (a Dutch adaptation of the ESAS) and a palliative care question prompt list, was used for data collection. The study in Chapter 6 provides insight into which the symptoms patients and family have questions about. It seems that patients and family use the question prompt list to indicate about which symptoms they worry, such as shortness of breath and pain. It is known that symptoms that patients prioritise are not necessarily the symptoms that cause the highest burden.85 This demonstrates that discussions about future scenarios can be tailored to the patient and family by using specific PROMs for assessment of symptom burden and information needs. Chapter 6 demonstrates that the information needs of patients and family can differ by the phase of their illness. For example, patients whose treatment was mainly aimed at symptom management had more often information needs about managing care at home. Discussing future scenarios is indicated and warranted: patients and family want and need to be informed about the future. The addition of the question prompt list to a symptom assessment scale supports clinicians to also ask about the worries of patients and family and to explain future scenarios. 8.4. RECOMMENDATIONS FOR FUTURE RESEARCH Recommendations for future research following from this thesis will be addressed in three paragraphs: 1. Promoting knowledge and self-initiation in clinicians, and patients and family 2. Intention to produce good results and avoid (future) problems 3. Thinking ahead to be able to act before things happen 8.4.1 Promoting knowledge and self-initiation in clinicians, and patients and family 1. Good education for undergraduate medical students Internationally, assessments of undergraduate medical education have resulted in implementation of end-of-life care courses or internships in the formal medical curricula. In the United Kingdom, for example, the assessment from 1983 revealed that four medical faculties did not pay any attention to end-of-life care.86 Thereafter, the British medical curricula were changed in 1994 and 2002 and are regularly evaluated ever since.87-89 Switzerland and Germany made similar changes.90-92 The study described in Chapter 2 and the studies by Pieters et al. can be considered as baseline measurements of the 8
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