Submission
| Title: | “We had no idea what to ask”: Development and Co-Design of Osteosarcoma Surgical Discussion Cards for Use at Diagnosis |
| Presenter: | Clayton Hicks |
| Institution: | Indiana University School of Medicine |
| Authors: | Clayton Hicks, BA BS, IUSM; Janet Panoch, PhD, IUSM; Chris Collier, MD, IUSM |
Abstract
| Background/Significance/Rationale: | Osteosarcoma is a rare bone cancer that often occurs around the knee. Options for surgery include amputation, limb salvage, and rotationplasty. With funding from a CTSI grant, a set of discussion cards is being developed with patient, caregiver, and provider input. The cards would be used at the time of diagnosis to introduce the surgical options prior to receiving the more comprehensive Osteosarcoma Decision Aid. |
| Methods: | Study 1: One parent focus group (n=9) and one patient focus group (n=6) focus group provided initial card conceptualization. A prototype was discussed and designed in four meetings total. Study 2: The prototype cards were reviewed by attendees (n=24) at the 2024 Osteosarcoma conference. They were asked what they liked and what improvements could be made. Content analysis was conducted and organized by two coders. Study 3: A stakeholder focus group of parents and patients (n=7) met to discuss and resolve conflicting recommendations Study 2. |
| Results/Findings: | Study 1: Cards should include questions to help families frame their values, focus on function rather than appearance, pros/cons of options, and resources for further information. Study 2: Recommendations included: providing images, better quality images, removing acronyms, clarifying wording, and reorganizing the order of the cards. Study 3: Recommendations included: setting up QR code for additional images to allow families to choose what they see and reframing the pros/cons to avoid good/bad labels. |
| Conclusions/Discussion: | This study suggests these conversations are not happening in ways that optimally benefit families. The first prototype was well received, and the recommendations provided guide development. A second prototype will be reviewed at the 2024 Musculoskeletal and Tumor Society for usability feedback from orthopedic oncologists. |
| Translational/Human Health Impact: | The discussion cards translate patient, parent, and provider needs into a tangible communication tool. The final version of the cards will be pilot tested in multiple institutions by early 2025. |
