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

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.

Keywords: Patient decision aid; Patient education; Prostate cancer; Shared decision-making; User-centered design.

Fig. 1

A schematic overview of the PDA development process. Each round is evaluated by one or more user groups and produces a prototype that is evaluated in the next round

Fig. 2

The characteristics of the user groups. A) The age distribution of the volunteers, patients, GPs, nurses, urologists and radiation oncologists. B) The clinical experience (years) of all clinicians. The numbers in each bar represent the number of participants in that category

Fig. 3

Initial draft of the prostate cancer decision aid. A) The proposed welcome screen containing buttons for each section of the tool. B) A proposed layout of the information to be displayed to a patient

Fig. 4

An excerpt of the answers to the usability survey questions by the radiation oncologists in round 1. The numbers in each bar represent the number of participants in that category

Fig. 5

An excerpt of the answers to the usability survey questions by the patients in round 2. The numbers in each bar represent the number of participants in that category

Fig. 6

An excerpt of the questions and corresponding answers in the usability survey. The left column contains the answers given by the clinicians (urologists) and the right column provides the results of the questionnaire from the patients

Fig. 7

An excerpt of the questions and corresponding answers in the usability survey as answered by 5 of the 8 GPs

Fig. 8

Screenshots of the final PDA version. Textual information was translated from Dutch to English for this Fig. A) A screenshot of one of the pages introducing brachytherapy in the PDA. On this page, an animation coupled with a voice-over explains the procedure in an understandable way. B) A screenshot of one of the preferences questions and its potential answers