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

Nienke Kerver*, Laura Boerema, Michael A.H. Brouwers, Corry K. van der Sluis, Sacha van Twillert

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)
56 Downloads (Pure)

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.

Original languageEnglish
Pages (from-to)281-287
Number of pages7
JournalProsthetics and orthotics international
Volume47
Issue number3
DOIs
Publication statusPublished - Jun-2023

Keywords

  • amputation
  • artificial limbs
  • cocreation
  • congenital
  • decision making
  • decision support techniques
  • patient decision aid
  • shared
  • traumatic
  • upper extremity
  • upper extremity deformities

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