Evidence map›Paper›PMID 38911602›Full record

ArticlePalliative care and social practice2024

'It is important to feel invited': what patients require when using the Utrecht Symptom Diary - 4 Dimensional, a qualitative exploration.

Tom Lormans, Everlien de Graaf, Sita de Vries, Carlo Leget, Saskia Teunissen

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Article in Palliative care and social practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

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0cells of the map it votes in
4citing papers in PubMed
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1 · What the graph read from it

What it found

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2 · The registry

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3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

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4 · The record

Corrections and comments

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5 · Who and what money

Authors and funding

5 authors.

Tom LormansJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Universiteitsweg 100, Utrecht 3584CG, The Netherlands.ORCID https://orcid.org/0000-0002-5613-0993
Everlien de GraafJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.ORCID https://orcid.org/0000-0001-8528-4070
Sita de VriesJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.ORCID https://orcid.org/0000-0002-7478-7462
Carlo LegetCare Ethics, University of Humanistic Studies, Utrecht, The Netherlands.
Saskia TeunissenJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht, The Netherlands.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: In palliative care, the Utrecht Symptom Diary - 4 Dimensional (USD-4D), a Dutch-adapted and validated patient-reported outcome measure, supports multidimensional symptom management through identification and monitoring of, as well as dialogue on symptoms and needs. For the USD-4D to optimally support patients' autonomy, it is essential to know what patients need to use it. Objective: This study aims to identify what patients need when using the USD-4D in clinical palliative care. Design: A generic qualitative design with primary and secondary analyses of semistructured interviews. Methods: Patients ⩾18 years with a life-limiting illness were purposefully recruited within hospice and home care settings if they were in their last year of life as identified by the surprise question. Patients had to be aware of their life-threatening condition. Patients were selected in two tranches. In the first tranche, patients had to have completed the USD-4D at least once. The second tranche consisted of patients who were not familiar with the USD-4D in clinical practice and were interviewed in a previous study on the content validity of the USD-4D. The interviews were transcribed verbatim and were subjected to thematic analysis. Results: Twenty-five patients were included (14 men, ages 44-87). Patients' needs when using the USD-4D were summarized in three themes: (1) feeling invited, (2) being aware of the purpose and function of the USD-4D, and (3) experiencing a personal and nonjudgmental approach. Conclusion: For patients to optimally benefit from the USD-4D as a supportive measure of their autonomy in clinical palliative care, it is essential that they feel invited to use it. Healthcare providers are tasked with setting the right preconditions for patients to want and to be able to use the USD-4D. For patients, this means healthcare providers should always be attuned to their personal preferences when communicating the purpose and function of the USD-4D and when they enter into dialogue with them.

Indexed as

autonomycommunicationpalliative carepatient-reported outcome measuressocialityspirituality

Identifiers

PMID38911602
PMCPMC11191620

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.