A Patient-Centered Website (Within Reach) to Foster Informed Decision-making About Upper Extremity Vascularized...

Area of Science:

• Medical Education
• Surgical Innovation
• Reconstructive Surgery

Background:

• Upper extremity vascularized composite allotransplantation (UE VCA), or hand transplantation, is a reconstructive option for limb loss.
• Limited data exists on long-term psychosocial outcomes and risk-benefit profiles of UE VCA.
• Patients require accessible, unbiased information for informed decision-making regarding UE VCA.

Purpose of the Study:

• To develop a neutral, accessible educational website to support informed decision-making for UE VCA.
• The website aims to provide comprehensive information for individuals with UE amputations considering this treatment.

Main Methods:

• Website content was developed based on 9 focus groups with individuals with UE amputations.
• Usability testing was conducted to refine navigability, design, content, comprehension, and cultural sensitivity.
• Quantitative data (After-Scenario Questionnaire, System Usability Scale, Net Promoter Score) and qualitative data (thematic analysis) were used.

Main Results:

• 44 participants with UE amputations contributed to focus groups and usability testing.
• Usability testing indicated high user satisfaction, with positive scores for usability, satisfaction, and likelihood to refer.
• Focus group and usability testing results informed website design, content, and accessibility features.

Conclusions:

• The "Within Reach" website offers neutral, patient-centered information on UE VCA.
• It is a potentially valuable resource for patients, families, and healthcare professionals involved in UE VCA.
• Further research is needed to evaluate the website's impact on knowledge and informed decision-making regarding UE VCA.