Submission
| Title: | Osteosarcoma Patient Decision Aid for Surgery in the Lower Limb: Alpha Test Results with Stakeholders |
| Co-Authors: | Watson, Jake, IUPUI; Goering, Elizabeth, PhD, Department of Communication, IUPUI; Panoch, Janet, PhD, Nephrology/ICMH, IU School of Medicine |
Abstract
Background/Significance/Rationale: Osteosarcoma is a rare bone cancer with about 1,000 cases annually in the United States. An online decision aid was developed following the International Patient Decision Aid Standards to help future families make the decision for surgery in the lower limb. This IRB-approved study tested the first version of this decision aid.
Methods: A survey to review the online decision aid was disseminated at the Osteosarcoma Conference in June 2022. Participants were asked to comment on what they liked, didn’t like, and what recommendations they would make for each section and received a gift card for their time.
Results/Findings: Participants (n=33) were survivors (15), parents (11), providers (5), and researchers (2). Content analysis was used to identify four comment areas: content, structure, visuals, and accessibility. Participants felt the content was clear and liked the testimonials, support links, long-term outcomes but disliked a noted bias; they felt it needed more evidence and references. Visually they liked the images, PDFs, videos, and the layout but disliked the lack of diversity and wanted more images. They felt the structure was organized and liked the bullet points, checklists, and color blocking but felt it could be better organized. For accessibility, it was well-written, easy to read, and understand but could be overwhelming and was very text heavy with inconsistent text. Recommendations include more visuals, specific content additions, larger font, links to scientific studies, a glossary, and a balance of realistic expectations with hope.
Conclusions/Discussion: Revisions will be made in consultation with a panel of orthopedic surgeons and an executive committee. The second iteration of the decision aid will be beta tested with end users (general public).
Translational/Human Health Impact: This is the first decision aid for this patient population, resulting in comprehensive information in one location. It will be freely available to surgeons and in patient support groups.
