Outcomes and Preferences for Decision-Making for Upper Limb Prosthetic Care: The Patient Journey: A Scoping Literature Review.

Objectives: To identify key concepts or themes and map the breadth of evidence describing the current decision-making process for prostheses between individuals with upper limb loss/difference (ULL/D) and prosthetists using a scoping review. Data Sources: We searched PubMed, Web of Science, Embase, and Cumulative index to Nursing and Allied Health Literuature (CINAHL) databases to identify studies using PRISMA guidelines. Study Selection: Qualitative, quantitative, quasi-experimental, randomized controlled studies or mixed methods studies in the English language with adults ≥18 years involving ULL/D from any cause were included. Studies were required to provide outcome measures, decision aids, discrete choice or other preference measurement methods, patient satisfaction, quality of life, cost, and choice characteristics of prostheses. Data Extraction: Characteristics were extracted from each study including study aim, author, publication year, country, sampling strategy, sample size, data collection methods, analysis, outcome or survey type, approach or discussion of prosthetic preference or choice, model or description of the prosthetic, results, and attributes or factors of decision-making. Two individuals assessed study quality using the 2018 validated Critical Appraisal Skills Program qualitative studies checklist. Data Synthesis: Of the 1388 studies, 67 were included. Our findings reveal a variety of study types and purposes that together describe factors important to a complex decision-making process. We conceptualized 5 main themes to create our literature landscape: (1) adequacy of outcomes/measures used, (2) extent of preference research, (3) prosthesis type comparisons, (4) factors critical to decision-making, and (5) the prescription process. A personalized approach to decision-making was stressed but there were only 5 prosthetic preference studies. We identified a list of the major factors or attributes important when choosing a prosthetic to be used in preference research; functionality, appearance, grip characteristics, durability, weight, and cost. We suggest a "user complexity" construct to integrate the studies on technology and users' choices. Conclusions: To the best of our knowledge, this is the first literature review to focus on preference measurements. Despite this lack of preference studies, there was consensus on the importance of including the patient's voice into the prosthetic choice through the prescription process. Our findings synthesize a body of literature that is not well organized or generalizable enough to help individuals and prosthetists make prosthesis decisions. Our insights can guide shared decision-making and improve prosthetic prescription.