Evidence map›Paper›PMID 39320669›Full record

ArticleJournal of cancer survivorship : research and practice2026

"Numbers call for action, personalized narratives provide support and recognition": a qualitative assessment of cancer patients' perspectives on patient-reported outcome measures (PROMs) feedback with narratives.

E Boomstra, S Hommes, R D Vromans, S van der Burg, A M Schrijver, M W J M Wouters, I M C van der Ploeg, M W van de Kamp, E J Krahmer, L V van de Poll-Franse and 1 more

Abstract read
In one paragraph

Article in Journal of cancer survivorship : research and practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
–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

2 citing papers in PubMed.

  1. Article
  2. Article
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

11 authors.

E Boomstra *Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0009-0006-4937-1656
S Hommes *Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences (TSHD), Tilburg University, Tilburg, The Netherlands.ORCID http://orcid.org/0000-0002-6473-5570
R D VromansDepartment of Communication and Cognition, Tilburg School of Humanities and Digital Sciences (TSHD), Tilburg University, Tilburg, The Netherlands.ORCID http://orcid.org/0000-0001-8040-1207
S van der BurgDepartment of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-3849-482X
A M SchrijverDepartment of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0002-2260-3983
M W J M WoutersDepartment of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0001-6173-0662
I M C van der PloegDepartment of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-2805-2104
M W van de KampDepartment of Urology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-1877-4226
E J KrahmerDepartment of Communication and Cognition, Tilburg School of Humanities and Digital Sciences (TSHD), Tilburg University, Tilburg, The Netherlands.ORCID http://orcid.org/0000-0002-6304-7549
L V van de Poll-FranseDepartment of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0003-0413-6872
K M de LigtDepartment of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands. k.d.ligt@nki.nl.ORCID http://orcid.org/0000-0001-9218-617X

Funding

ZonMw 05160472110001
6 · The paper itself

Abstract

purposePatient-reported outcome measures (PROMs) are questionnaires completed by patients to gain insight in their health-related quality of life. However, patients often find the interpretation of PROMS challenging. A personalized narrative, i.e., a story with patients' experiences tailored to the reader, could help explain PROMs and might be appreciated alongside numerical outcomes. We studied how cancer patients perceive PROMs feedback presented in a regular numerical and a novel narrative format.

methodsCancer patients who completed PROMs in routine clinical practice were recruited. All participants received numerical feedback and a personalized narrative. Semi-structured interviews were conducted to uncover perceptions of both formats. Interviews were analyzed with an inductive reflexive approach to thematic analysis.

resultsTwenty-nine patients with breast cancer, melanoma, and bladder cancer participated. Thematic analysis identified six themes: "Understanding: I get the gist of it!"; "Usefulness: Tell me why I should complete PROMs"; "Format preferences: Numbers are cold, narratives are warm"; "Taking action: Can I do something about my score?"; "Personal relevance: Personalized narratives show me what life has in store for me"; and "Personal relevance: That's (not) me!" Numbers seemed to help participants act, whereas narratives may provide emotional support and recognition. Participants identified with the content of the narrative yet differed in how they related to the main character.

conclusionPersonalized narratives could be a useful addition to PROMs feedback. The studied formats seem to serve different purposes; numbers help to facilitate action, personalized narratives provide recognition. IMPLICATIONS FOR CANCER SURVIVORS: Personalized narratives may be a useful new way to communicate about quality of life to cancer survivors and help them to envision what the impact of cancer can be.

Indexed as

NarrationNeoplasmsPatient Reported Outcome MeasuresQuality of LifeAdultAgedFemaleHumansMaleMiddle AgedQualitative ResearchSurveys and QuestionnairesHealth-related quality of lifePatient communicationPatient-reported outcome measuresPersonalized careQuality of care

Identifiers

PMID39320669
PMCPMC12988888

What Socratic holds

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LicenceCC BY-NC-ND
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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 Socratic graph.