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. Electronic supplementary material The online version of this article (10.1186/s12911-019-0862-4) contains supplementary material, which is available to authorized users.

Preventing, identifying, and managing medication-related osteonecrosis of the jaw: a practical guide for nurses and other allied healthcare professionals

“…As patients often give risk more weight than benefit, patient decision aids, such as handouts, may help inform patients on the benefits and harms associated with different therapy options, aiding in shared decision-making [32,34]. For example, the Scottish Dental Clinical Effectiveness Programme has published dental clinical guidance [35], which includes a section on "Points to Cover During MRONJ Risk Discussion," and provides an illustrated figure for explaining risk to patients (Online resource 1; Supplementary data 4).…”

A personalized decision aid for prostate cancer shared decision making

“…This DA will fill a gap, as most DAs for SDM in prostate cancer exist as booklets or online education sites [ 15 ], with general information about treatment options and side effects, focused on usability [ 16 ]. Even though physicians have been encouraged to participate in SDM and “patient-centered-care” since the 1980s [ 4 ], patients still report that physicians make treatment related decisions without involving them [ 17 ].…”

Development and Evaluation of a Decision Aid to Support Patients’ Participatory Decision-Making for Tumor-Specific and Palliative Therapy for Advanced Cancer: Protocol for a Pre-Post Study

“…Interviews will be audiotaped, transcribed verbatim, and analyzed according to qualitative inductive content analysis as described by Sandelowski [ 50 ]. We decided to use this approach as there is not much research on DAs that are not limited to a certain cancer type in advanced cancer near the end of life [ 21 , 36 , 37 ]. As this content might differ considerably from usual cancer DAs, we favored a more open approach without using the pre-existing categories for analysis as suggested by deductive content analysis.…”

“…There are only a few DAs for advanced cancer patients even though recommendations for their systematic development have been published [ 21 ]. Existing DAs are limited in their use by a certain type of cancer (ie, colorectal cancer or prostate cancer [ 36 , 37 ]) or target certain treatment scenarios (ie, participation in early phase clinical trials [ 2 ], use of standard systemic cancer therapies [ 38 , 39 ], or initial treatment after diagnoses [ 40 ]). To our knowledge, one patient communication aid in the Dutch language has been developed that targets clarification of patients’ preferences and encompasses a question prompt list that can be used by patients with advanced cancer regardless of tumor type when talking to their oncologist [ 11 ].…”