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Authors
Hofstede, Z. M. W.
Echteld, M. A. https://orcid.org/0000-0001-8636-6342
Mogendorff, K. G. https://orcid.org/0000-0003-4503-9796
Maes-Festen, D. A. M. https://orcid.org/0000-0002-7613-0720
Oldenmenger, W. H. https://orcid.org/0000-0001-6855-6505
Joore, J. G.
Nieuwhoff - van der Gouw, S. A. M.
Zaal - Schuller, I. H. https://orcid.org/0000-0001-8640-5292
Groot, M. M. https://orcid.org/0000-0002-5740-3607
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Funding
Funding for this research was provided by:
The Netherlands Organisation for Health Research and Development
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Article History
Received: 27 May 2026
Accepted: 21 July 2026
First Online: 28 July 2026
Declarations
Ethics approval and consent to participate: According to Dutch law (Medical Research Involving Human Subjects Act, WMO), this study is not subject to extended ethical review, as participants are not exposed to medical interventions and they are also not subordinated to behavioural rules.However, the study was reviewed and approved as non-WMO-study by the ethics committee of Rotterdam University of Applied Sciences (approval number 20240702). All participants will receive written information about the study’s objectives, the nature of their participation, and their rights, including the ability to withdraw at any time without consequences. This information will be distributed via the participating care organizations. The researcher will not be in direct contact with the participant.Before participation, informed consent will be obtained from either the participant (if capable to decide) and/or their legal representative, in accordance with ethical guidelines. By signing the consent form, the participants and/or their representatives confirm that:1. They agree that symptom questionnaires (USD-z) will be completed at regular intervals (monthly in the palliative phase, weekly in the terminal phase, and daily in the dying phase) until either the participant's death or the termination of data collection;2. They understand the information provided and have had the opportunity to ask questions;3. They are informed that the study is observational in nature and is not intended to alter treatment or care. Participation involves only symptom monitoring, interviews with professionals, and analysis of medical records;4. In case the legal representative provides consent, (s)he did so on behalf of the participant but does not personally participate in the study.All collected data will be pseudonymised. Participants’ names and identifying details will be replaced with a unique code, which will be securely stored in an encrypted database. The password-protected file will be accessible only by the research team, ensuring compliance with General Data Protection Regulation (GDPR) standards. In all future publications and reports, only these codes will be used to protect participants' anonymity and privacy.
Consent for publication: Not applicable.
Competing interests: The authors declare no competing interests.
