General introduction 23 questions, especially about prognosis or end-of-life issues, that they were more satisfied with the consultation, and that healthcare professionals provide more information.117, 124 Clayton et al. developed a question prompt list for use in palliative care. They asked input from clinicians, patients, and their family.112 In their randomised controlled trial, they found that patients and family who had used the question prompt list asked twice as many questions compared to those who had not. They asked more questions about prognosis and end-of-life issues. Less information needs about the future were left unaddressed. On average, the consultations were 31 minutes longer when a question prompt list was used. There were no differences in satisfaction with care or anxiety scores between patients who did and did not use the question prompt list.131 The question prompt list of Clayton et al. can be used by both patients and their family. Hebert et al. developed a question prompt list focused on family of patients in need of palliative care. They asked input from family and clinicians to compose the question prompt list. Their pilot study demonstrated that both family and clinicians found it useful in practice.132 In 2013, the hospital palliative care consultation team of Leiden University Medical Center constructed a conversation guide that combines the Utrecht Symptom Diary with an adapted Dutch version of the question prompt list by Clayton et al. This conversation guide is called Leiden Guide on Palliative care (LGP). The LGP is handed out to patients and their family as preparation for consultations with the palliative care consultant. The use of the LGP has not been evaluated before. 5. CONTEXT OF THIS THESIS Since its start in 2011, the Center of Expertise in Palliative Care (CEPC) of Leiden University Medical Center hosts a specialist palliative care consultation team that holds the responsibilities of a specialist palliative care team as described by Henderson et al.23, 133 The core activities of the CEPC are aimed at integration of care, education, and research; empowering generalist healthcare professionals; and supporting patients and their family. The palliative care consultation team uses the four-dimensional palliative care approach including the physical, psychologic, social, and existential dimensions in all their activities. The CEPC has formulated the following points of focus: • Transmural and interdisciplinary collaboration between all care settings (home, hospice, nursing home and hospital) • Timely identification of patients with palliative care needs • Advance care planning • Empowering patients and their family • Two-track approach: the integration of a palliative care approach into standard care 1
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