Patient Preferences Matter: A Qualitative Inquiry With Patients About the Surgical Decision for Osteosarcoma in the Lower Extremity

Abstract

Purpose The experience of surgical patient decision-making for amputation, rotationplasty, or limb salvage surgery for the lower extremity was explored with osteosarcoma survivors and parents. Issues and patient concerns were examined prospectively in Facebook posts and retrospectively in personal interviews. Recommendations were sought for the development of a decision aid. Methods A qualitative inquiry was conducted in two studies: 1) a content analysis of 15 Facebook posts on the Osteosarcoma and Ewing’s Sarcoma Support Group about the surgical decision, and 2) a narrative analysis of 20 interviews with survivors and parents about their lived experience. The interview guide was informed by a knowledge translation theoretical model. In-person or video interviews included 29 parents or adolescent-young adults between the ages of 14-71 across 15 states. Results Participants were concerned about making the best decision for themselves or their child. Having little time to make the decision contributes to feeling overwhelmed and uninformed. The lack of information about options, potential limitations, prosthetic needs, and long-term functional outcomes impacts the decision-making process. Resources for finding information are limited. Shared decision-making approaches were preferred though many decisions were made by the surgeon. Patients felt unprepared for complications encountered after limb salvage. Conclusions Limb salvage surgery remains the gold standard for most providers; participants felt there was a bias on the surgeon’s part for salvage. Potential complications and uncertainties of each option were largely omitted in consultations; information about living with a prosthesis is an unmet need for decision-making. The decision affected their quality of life in ways they did not anticipate, resulting in additional decisions. Implications The findings of this study can be used in medical education for orthopedic surgeons to understand the long-term outcomes of limb salvage surgery. Patient preferences matter in the decision and patients who are involved in the decision are more satisfied if they are prepared for the unknown and potential complications. Recommendations for a decision aid include an online format, content that includes a discussion of uncertainties as well as complications of each option, patient stories for long-term outcomes, and resources for psychosocial support.