TY - JOUR
T1 - The systematic and participatory development of a patient decision aid about terminal devices for people with upper limb absence
T2 - The PDA-TULA
AU - Kerver, Nienke
AU - Boerema, Laura
AU - Brouwers, Michael A.H.
AU - van der Sluis, Corry K.
AU - van Twillert, Sacha
N1 - Publisher Copyright:
© 2023 SAGE Publications Inc.. All rights reserved.
PY - 2023/6
Y1 - 2023/6
N2 - 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.
AB - 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.
KW - amputation
KW - artificial limbs
KW - cocreation
KW - congenital
KW - decision making
KW - decision support techniques
KW - patient decision aid
KW - shared
KW - traumatic
KW - upper extremity
KW - upper extremity deformities
UR - http://www.scopus.com/inward/record.url?scp=85162884403&partnerID=8YFLogxK
U2 - 10.1097/PXR.0000000000000232
DO - 10.1097/PXR.0000000000000232
M3 - Article
C2 - 36943778
AN - SCOPUS:85162884403
SN - 0309-3646
VL - 47
SP - 281
EP - 287
JO - Prosthetics and orthotics international
JF - Prosthetics and orthotics international
IS - 3
ER -