Within Reach -- A Patient-Centered Website to Foster Informed Decision Making about Upper Extremity Vascularized Composite Allotransplantation: Development and Usability Testing (Preprint)

Abstract

Upper extremity (UE) vascularized composite allotransplantation (VCA) (hand transplantation) is a reconstructive treatment option for patients with upper extremity loss. Approximately 37 UE VCAs have been performed in the U.S. to date, thus little is known about long-term psychosocial outcomes and whether benefits outweigh risks. To make an informed treatment decision, patients must understand the procedure, risks, and potential benefits of UE VCA. However, few educational resources are publicly available that provide unbiased, comprehensive information about UE VCA.

This paper describes the development of a neutral, accessible and ADA-compliant educational website supporting informed decision-making about UE VCA as a treatment option for individuals with UE amputations.

Website content development was informed by 9 focus groups conducted with civilians and military service members with UE amputations at three study sites (Northwestern University, Johns Hopkins University, and Walter Reed National Military Medical Center). After initial website development, we conducted usability testing to identify ways to improve navigability, design, content, comprehension, and cultural sensitivity. Participants were administered the After-Scenario Questionnaire (ASQ) to assess user performance after completing navigational tasks, System Usability Scale (SUS) to measure perceived usability of the website, and Net Promoter Score (NPS) to measure user satisfaction. Quantitative data were analyzed using descriptive statistics. Qualitative data were analyzed using rapid thematic analysis.

A total of 44 individuals with UE amputations participated in focus groups (n=37) and usability testing (n=14). Most participants in focus groups and usability testing, respectively, were male (64.9%, 79%), White (73%, 64%), with unilateral limb loss (51.4%, 86%), and mean ages of 48 and 50 years. Four themes emerged from the focus groups: (1) perception of the website as a neutral, unbiased resource about UE VCA, (2) preference for plain language, and limited use of medical terminology, (3) need to clarify the target audience as individuals with UE limb loss or healthcare professionals, (4) photographs should display diversity among UE transplant recipients and the reality of undergoing a UE VCA. Usability testing revealed that participants had a positive impression of the website. The mean ASQ score ranged from 1.3-2.3 across task scenarios, indicating high satisfaction with website usability; the mean SUS score of 88.9 indicated user satisfaction with website usability; and the mean NPS score of 9.6 indicated that users are enthusiastic and will likely refer individuals to the website.

Findings suggest that our educational website, Within Reach, provides neutral, patient-centered information, and may be a useful resource about UE VCA for individuals with UE amputations, families’, and healthcare providers. Healthcare providers may inform UE VCA candidates about Within Reach to supplement current VCA education processes. Future research should assess whether Within Reach improves informed decision-making about UE VCA as a treatment option.