TY - JOUR
T1 - Development and validation of a patient decision aid for prostate Cancer therapy
T2 - from paternalistic towards participative shared decision making
AU - Ankolekar, Anshu
AU - Vanneste, Ben G. L.
AU - Bloemen-van Gurp, Esther
AU - van Roermund, Joep G.
AU - van Limbergen, Evert J.
AU - van de Beek, Kees
AU - Marcelissen, Tom
AU - Zambon, Victor
AU - Oelke, Matthias
AU - Dekker, Andre
AU - Roumen, Cheryl
AU - Lambin, Philippe
AU - Berlanga, Adriana
AU - Fijten, Rianne
PY - 2019/7/11
Y1 - 2019/7/11
N2 - BackgroundPatient 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.MethodsWe 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.ResultsInformational 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/.ConclusionsUser-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.
AB - BackgroundPatient 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.MethodsWe 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.ResultsInformational 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/.ConclusionsUser-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.
KW - Patient decision aid
KW - Prostate cancer
KW - Patient education
KW - Shared decision-making
KW - User-centered design
KW - QUALITY-OF-LIFE
KW - SURGICAL-TREATMENT
U2 - 10.1186/s12911-019-0862-4
DO - 10.1186/s12911-019-0862-4
M3 - Article
C2 - 31296199
SN - 1472-6947
VL - 19
JO - BMC Medical Informatics and Decision Making
JF - BMC Medical Informatics and Decision Making
M1 - 130
ER -