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BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2019

Open Access 01-12-2019 | Prostate Cancer | Technical advance

Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making

Authors: Anshu Ankolekar, Ben G. L. Vanneste, Esther Bloemen-van Gurp, Joep G. van Roermund, Evert J. van Limbergen, Kees van de Beek, Tom Marcelissen, Victor Zambon, Matthias Oelke, Andre Dekker, Cheryl Roumen, Philippe Lambin, Adriana Berlanga, Rianne Fijten

Published in: BMC Medical Informatics and Decision Making | Issue 1/2019

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Abstract

Background

Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly.

Methods

We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our user-base consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers.

Results

Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://​beslissamen.​nl/​.

Conclusions

User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.
Appendix
Available only for authorised users
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Metadata
Title
Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making
Authors
Anshu Ankolekar
Ben G. L. Vanneste
Esther Bloemen-van Gurp
Joep G. van Roermund
Evert J. van Limbergen
Kees van de Beek
Tom Marcelissen
Victor Zambon
Matthias Oelke
Andre Dekker
Cheryl Roumen
Philippe Lambin
Adriana Berlanga
Rianne Fijten
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2019
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-019-0862-4

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