Evidence map›Paper›PMID 35901043›Full record

ArticlePloS one2022

Development of an advance directive 'communication tool' relevant for patients with advanced cancer in six European countries: Experiences from the ACTION trial.

Caroline Moeller Arnfeldt, Mogens Groenvold, Anna Thit Johnsen, Branka Červ, Luc Deliens, Lesley Dunleavy, Agnes van der Heide, Marijke C Kars, Urška Lunder, Guido Miccinesi and 4 more

Abstract read
In one paragraph

Article in PloS one, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 1 synthesis or guideline pooled it.

  1. Guideline
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Caroline Moeller ArnfeldtDepartment of Public Health, University of Copenhagen, Copenhagen, Denmark.ORCID 0000-0003-2438-6019
Mogens GroenvoldDepartment of Public Health, University of Copenhagen, Copenhagen, Denmark.
Anna Thit JohnsenDepartment of Psychology, University of Southern Denmark, Odense, Denmark.
Branka ČervUniversity Clinic for Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.
Luc DeliensEnd-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Ixelles, Belgium.
Lesley DunleavyInternational Observatory on End of Life Care, Lancaster University, Lancaster, United Kingdom.
Agnes van der HeideDepartment of Public Health, Erasmus MC, Rotterdam, The Netherlands.
Marijke C KarsJulius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands.
Urška LunderUniversity Clinic for Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.
Guido MiccinesiCenter for Oncological Network, Study and Prevention of Cancer (ISPRO), Florence, Italy.
Kristian PollockSchool of Health Sciences, University of Nottingham, Nottingham, United Kingdom.
Judith A C RietjensDepartment of Public Health, Erasmus MC, Rotterdam, The Netherlands.
Jane SeymourDivision of Nursing and Midwifery, Health Sciences School, University of Sheffield, Sheffield, United Kingdom.ORCID 0000-0002-9384-2551
ACTION consortium

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe ACTION trial evaluated the effect of a modified version of the Respecting Choices´ advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed.

aimTo describe the development of a multinational cancer specific advance directive, the ´My Preferences form´, which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment´ Form, to be used within the ACTION trial.

methodsFramework analysis of all textual data produced by members of the international project team during the development of the ACTION advance directives (e.g. drafts, emails, meeting minutes…). SETTING/

participantsACTION consortium members (N = 28) with input from clinicians from participating hospitals (N = 13) and ´facilitators´ (N = 8) who were going to deliver the intervention.

resultsTen versions of the ACTION advance directive, the ´My Preferences form´, were developed and circulated within the ACTION consortium. Extensive modifications took place; removal, addition, modification of themes and modification of clinical to lay terminology. The result was a thematically comprehensive advance directive to be used as a communication tool across the six European countries within the ACTION trial.

conclusionThis article shows the complex task of developing an advance directive suitable for cancer patients from six European countries; a process which required the resolution of several cross cultural differences in law, ethics, philosophy and practice. Our hope is that this paper can contribute to a deeper conceptual understanding of advance directives, their role in supporting decision making among patients approaching the end of life and be an inspiration to others wishing to develop a disease-specific advance directive or a standardised multinational advance directive.

Indexed as

Advance Care PlanningNeoplasmsPhysiciansAdvance DirectivesCommunicationHumans

Identifiers

PMID35901043
PMCPMC9333298

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.