"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.

Autor: Boomstra E; Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands., Hommes S; Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences (TSHD), Tilburg University, Tilburg, The Netherlands.; Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands., Vromans RD; Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences (TSHD), Tilburg University, Tilburg, The Netherlands., van der Burg S; Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands., Schrijver AM; Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands., Wouters MWJM; Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands.; Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands., van der Ploeg IMC; Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands., van de Kamp MW; Department of Urology, Netherlands Cancer Institute, Amsterdam, The Netherlands., Krahmer EJ; Department of Communication and Cognition, Tilburg School of Humanities and Digital Sciences (TSHD), Tilburg University, Tilburg, The Netherlands., van de Poll-Franse LV; Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands.; Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands.; Department of Medical and Clinical Psychology, Center of Research On Psychological and Somatic Disorders (CoRPS), Tilburg University, Tilburg, The Netherlands., de Ligt KM; Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands. k.d.ligt@nki.nl.
Jazyk: angličtina
Zdroj: Journal of cancer survivorship : research and practice [J Cancer Surviv] 2024 Sep 25. Date of Electronic Publication: 2024 Sep 25.
DOI: 10.1007/s11764-024-01663-7
Abstrakt: Purpose: Patient-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.
Methods: Cancer 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.
Results: Twenty-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.
Conclusion: Personalized 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.
(© 2024. The Author(s).)
Databáze: MEDLINE
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