Presentation Title: Doctors and Patients and Parents, Oh My!: A Translational Case Study with Diverse Stakeholders for a Patient Decision Aid from Development to Implementation
Author Name(s): Janet Panoch, PhD
Author Department and School Affiliation: Indiana University School of Medicine Department of Pediatrics
Abstract: Patients diagnosed with osteosarcoma in the lower extremity often have the option to choose between amputation, limb salvage surgery with endoprosthesis, or rotationplasty, in which the ankle and foot are rotated and transplanted to the femur. Each has a very different appearance and functional ability. Long-term outcomes, potential complications, and mobility limitations are uncertain and largely omitted in patient-provider consultations.
An interdisciplinary team has been assembled to develop content using advanced technology for an online, interactive patient decision aid. The International Patient Decision Aid Standards (IPDAS) include needs assessments with both patients and providers prior to development. IPDAS requirements also include discussion of the potential risks and benefits for each option and realistic personal stories with long-term patient-reported outcomes.
Breakout groups in the form of task forces for orthopedic surgeons, oncologists, rehabilitation professionals, decision-making experts, and osteosarcoma community members will discuss key decision points and pathways for information dissemination to youth, adults, and parents for decision-making. The product will be pilot tested and beta tested and has implications for orthopedic education changes from the “saving-the-leg” gold standard to shared decision-making.
This project is funded by a five-year NIH grant between the Amputee Coalition and the Administration for Community Living.