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The use of proportional palliative sedation for the relief of refractory symptoms: an international multicenter study

Deliverables

List of recruited participants

Task 6.1 – Steering group and expert panel (M3-6) A steering group of 3-5 persons will be formed from members of the consortium, led by Lukas Radbruch and Birgit Jaspers. Experts on the topic of palliative sedation will then be identified from a literature search and via the national hospice and palliative care organiziations and the European Association for Palliative Care (EAPC). Experts will be asked for other experts in the field using a snowball technique. Expert selection will also consider regional distribution, including adequate numbers of experts from northern, southern, eastern and western European countries. Care will be take that the panel represents multiple professions and cultural and religious affiliations. Invitation of the expert panel will be via email, and the consultation will be done with an online survey (Surveymonkey).

Dissemination plan (PDER)

Task 8.2 Plan of dissemination and exploitation of results (M3-M8) The Plan of Dissemination and Exploitation of Results (PDER) (D 7.2) has been drafted and will be further refined at regular points during the project. This will include scientific papers (at least one per work package except management), blogs (at least two per workpackage except management), congress abstracts and presentations (at least two at every EAPC congress during the project)

Study protocol

Task 2.1 Drafting of the protocol. (M3-9) Because palliative sedation has been a confusing topic from a research perspective, a thorough and agreed multicenter research protocol is needed. The protocol will involve terms and terminology (drawn from WP1) as well as the primary and secondary outcome measures, the inclusion criteria, the case report form-CRF, the informed consent form, conform Good Clinical Practice. For the patients at least the following observational scales are foreseen: ESAS for numerical rating of symptoms, DS-DAT for patient discomfort, and RASS for levels of sedation. For the family members the CRA about burden and rewards of informal caring and the CanhelpLITE-sv for satisfaction with care. See for study details the PalliativeSedation clinical study appendix. Partner Radboudumc will lead this.

Protocol for search strategy

Task 1.1 Definition of search strategy and the protocol (M1-3) This phase will produce a protocol for the collection and analysis of literature information. The protocol will describe the rationale, hypothesis, and planned methods. The protocol will be registered in a registry such as PROSPERO. Objective 1 will be covered by a systematic review of domains of refractory symptoms and palliative sedation; objective 2 would need the design of an on-line survey using appropriate software (i.e. Survey Monkey); objective 3 will be covered by a integrative review. The review will follow PRISMA guidance. Literature search will be based on scientific databases like Pubmed, Medline, and Embase. In addition grey literature including non-english literature will be collected for the participating countries via an online survey. The design will be lead by University of Navarra with the collaboration of Pecs university together with experts in literature review methods from the Lancaster University group. The experience of partner Leuven in leading systematic research in the previous FP7-Insup-C project will be an added value for the design of the strategy.

Letter with logo/website

Task 8.1 Logo, website, media releases (M1-3) A high quality engaging logo and website will be designed by partner ULANC. In addition, we will prepare templates for presentations and other output to promote the visual identity of the project. Press releases and media summaries will be used to communicate the launch of the project, which will be followed up at appropriate times to announce the outcomes of specific studies and raise the profile of the project.

Cost consequence format

Task 5.1 Design the framework for cost consequence analysis as a ‘balance sheet’ with elements of cost of the intervention (palliative care sedation) and its consequences - monetary, quantitative, and descriptive. (M3-M6). HCS as lead partner for this WP together with support from a health economist from partner UP will develop this framework and the list with elements of cost . This balance sheet will include a format to list costs related to palliative sedation intervention in terms of: health care staff, family meetings, interdisciplinary meetings, expert consultation costs, equipment (pumps). This cost format will serve as an imput for the clinical workpackage (WP6). This will be discussed and refined in the first consortium meeting

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Publications

Picturing palliative sedation: A new European investigation

Author(s): Jeroen Hasselaar (Radboud University Medical Center), Sheila Payne (International Observatory on End of Life Care at Lancaster University) and Julie Ling (European Association for Palliative Care – EAPC)
Published in: EAPC BLOG, Issue 20 May 2019, 2019

Palliative sedation in the context of COVID-19: Expert opinions from the Palliative Sedation project

Author(s): Dr Jeroen Hasselaar, (Project Coordinator), Prof Dr K Vissers (Netherlands), Prof Dr S Mercadante (Italy), Prof Dr C Centeno (Spain), Prof S Payne (UK), Prof N Preston (UK), Prof Dr L Radbruch (Germany), M van der Lee, MSc (Netherlands), Dr A Csikós, (Hungary) and Prof Dr J Menten (Belgium),
Published in: EAPC BLOG, Issue 20/04/2020, 2020