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193 History of the osteosarcoma decision aid: patient engagement from conception through dissemination
  1. Janet Panoch1,
  2. Chris Collier2,
  3. Clayton Hicks1,
  4. Sabria Abufares1
  1. 1IU School of Medicine, Indiana, USA
  2. 2Orthopedic Oncology, IU School of Medicine, Indiana, USA

Abstract

Introduction Osteosarcoma is a rare bone cancer with about 1,000 cases annually in the United States. Most tumors involve the knee joint; options include amputation, rotationplasty, and limb salvage surgery. Families and patients often struggle to find clear information to understand risk, benefits, and long-term outcomes of the options. The International Patient Decision Aid Standards guided development of the first online decision aid (www.osteosarcomadecisionaid.com) for future families.

Methods A history of patient-involvement from 2019–2023 took place from conception to dissemination with patients, families, and providers. Studies included a content analysis of Facebook posts to identify existing knowledge gaps and needs, and to inform interview guides for personal interviews with patients, survivors, and families (n=29), and surveys with providers (n=29).

Results Participants who viewed the preliminary prototype (n=33) were survivors (15), parents (11), providers (5), and researchers (2). Content analysis was performed by all three coders who identified four focus areas in their comments: content, structure, visuals, and accessibility.

Discussion Recommendations include more visuals, specific content additions, larger font, links to scientific studies, a glossary, increased accessibility (e.g., captions for videos), and a balance in the overall tone of the site between offering realistic expectations and hope.

Conclusion Revisions to the final decision aid were made in consultation with orthopedic oncologists. The final version was made available to three Osteosarcoma/Ewing Sarcoma Facebook groups on May 1, 2023. By December 2023, there were over 1900 site visits in 58 distinct countries. Translations have been started in Spanish, two dialects in the Philippines, and Polish.

Usability tests will begin in early 2024 with patients and family members, who were involved in shared decision making for surgery.

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