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

• Published in: BMC medical informatics and decision making Vol. 19; no. 1; pp. 130 - 11
• Main Authors: Ankolekar, Anshu, Vanneste, Ben G L, Bloemen-van Gurp, Esther, van Roermund, Joep G, van Limbergen, Evert J, van de Beek, Kees, Marcelissen, Tom, Zambon, Victor, Oelke, Matthias, Dekker, Andre, Roumen, Cheryl, Lambin, Philippe, Berlanga, Adriana, Fijten, Rianne
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 11-07-2019; BioMed Central; BMC
• Subjects: Adult; Analysis; Antineoplastic agents; Brachytherapy; Cancer patients; Cancer therapies; Cancer treatment; Care and treatment; Clinical decision making; Collaboration; Consultation; Decision making; Decision Making, Shared; Decision Support Techniques; Feedback; Female; General practitioners; Health education; Health informatics; Humans; Interviews; Male; Medical personnel; Nurses; Older people; Oncology; Oncology Nursing; Patient decision aid; Patient education; Patient Education as Topic; Patient Participation; Patient satisfaction; Patients; Physicians; Polls & surveys; Prostate cancer; Prostatic Neoplasms - therapy; Prototypes; Quality of life; Radiation; Radiation therapy; Risk factors; Shared decision-making; Side effects; Surveillance; Systematic review; Technical Advance; Urology; Usability; User groups; User requirements; User satisfaction; User-centered design; Visual aids; User-centered design; Patient decision aid; Patient education; Prostate cancer; Shared decision-making
• ISSN: 1472-6947; 1472-6947
• DOI: 10.1186/s12911-019-0862-4

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.
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.
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/ .
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.