Chapter 6 112 METHODS Setting This observational study took place at a Dutch academic hospital that includes a Center of Expertise in Palliative Care since 2011 and hosts a palliative care consultation team.19 This team is available for consultation to all clinical departments that care for adult patients. To support consultations, the team has developed the Leiden Guide on Palliative Care, hereinafter referred to as the conversation guide, which encompasses a PROM (the Utrecht Symptom Diary)20 and a question prompt list to help patients, their families, and clinicians to prepare for consultations. The development of the conversation guide is published elsewhere.21 The conversation guide is distributed to patients and family before consultations to empower them to ask their questions and collaboratively set the agenda for the consultation. Patients and family are instructed by the palliative care consultant on how to use the conversation guide. Patients could use it alone, or with family. Before providing the conversation guide, the consultants of the palliative care consultation team estimate whether patients and family have sufficient time and energy to use it. They do not give it to patients who are already in the dying phase. Patients and family may refuse to use (parts of) the conversation guide. In 20-25% of all palliative care consultations, the conversation guide is used. Written consent from patients was not required according to Dutch (WGBO, article 458) and European (General Data Protection Regulation) Law. The study was approved by the Medical Ethical Committee of Leiden University Medical Center on 26 April 2019. Participants and procedures Patients were included if they had had a consultation with a palliative care consultant, had used a conversation guide between December 2013 and November 2018, and were at least 18 years old. If patients had used a conversation guide multiple times, only the first conversation guide was used for data collection. Two trained research assistants collected data from the conversation guides. Patient characteristics (age, sex, primary diagnosis) and survival in weeks from consultation to death or study closure were taken from electronic patient records. Survival data were updated until 21 January 2021. For all primary diseases, the palliative disease phase (disease-modifying phase or symptom-management phase) was categorised retrospectively from electronic patient records by a palliative care consultant (EJMdN) and a researcher (MV). They used Lynn and Adamson’s classification: - Disease-modifying phase, which focusses on disease treatment for life-prolongation and symptom management; - Symptom-management phase, in which treatment is aimed at symptom relief or terminal care.22 They had consensus meetings about codes that were unclear during data collection.
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