The systematic and participatory development of a patient decision aid about terminal devices for people with upper limb absence: The PDA-TULA

Abstract

Selecting an upper limb prosthesis seems to be a challenge considering the high rejection rates. A patient decision aid (PDA) could support the decision-making process by providing information about available options and clarifying the patients' values related to those options. This study aims to describe the developmental process of a PDA about terminal devices (TDs) for people with upper limb absence: PDA-TULA. The developmental process was based on The International Patient Decision Aid Standards. We aimed at adults with major unilateral upper limb absence. A steering group including patients, clinicians, researchers, software and implementation experts was composed. The content and design of the PDA were based on a qualitative literature meta-synthesis, focus groups with patients and clinicians, surveys among patients and prosthetists, a nationwide digital meeting with clinicians and prosthetists, and information from manufacturers. Information on features of TDs was systematically collected, ordered, and refined. Subsequently, drafts of the PDA-TULA were made, improved, integrated into the software, and alpha tested. The digital PDA-TULA consists of three parts: (1) information about TDs; (2) consideration of personal values regarding the TDs; (3) comparison of TD profiles with a personal profile based on indicated preferences. A summarizing overview is offered to patients and clinicians. To conclude, a digital PDA, which was integrated into the national working process of clinicians, was developed in a systematic co-creation process. The PDA enables patients and their significant others to consider and formulate their preferences about TDs during the prosthesis selection process.

Figure 1.

Overview of the developmental process of the PDA-TULA based on the International Patient Decision Aid Standards. PDA, patient decision aid; PDA-TULA, patient decision aid about terminal devices for people with upper limb absence; PPP-Arm, Prosthesis Prescription Protocol of the Arm; TD, terminal device; ULA, upper limb absence; ULP, upper limb prostheses.

Figure 2.

Examples of 2 pages from part 1 of the patient decision aid about terminal devices for people with upper limb absence. An information page about 1 category of TDs is depicted on page A. When clicking on “Click here to see more specific information about myoelectric hooks” page B appears, on which more detailed information about TDs belonging to the category is depicted. Features were graded on a traffic light color scale. When clicking on a question mark, additional information about the feature and the three-color scale appears. ETD, electric terminal device; TD, terminal device.

Figure 3.

Examples of 2 pages from parts 2 and 3, respectively, of the PDA-TULA. (a) Shows information about the aspect “wearing time” with the corresponding question. A part of the information and pictures on this page were replaced by the “∼” signs. (b) Shows the summary page of the PDA-TULA. In green, the personal profile of the patient is shown. In white, the profile of one of the categories of TDs is shown. By clicking on one of the gray arrows, the profile of another TD category appears. PDA-TULA, PDA with a primary focus on terminal devices for people with upper limb absence; TD, terminal device.