Patient experiences with pre-amputation communication and shared decision-making: a national cross-sectional survey

Background Shared decision-making (SDM) can be crucial when making sensitive decisions, such as determining the appropriate level of major lower extremity amputation (MLEA). Despite clinicians aiming for SDM and patients wanting active participation, barriers persist to implementation. Aim To explore patients’ experiences with pre-amputation communication and shared decision-making and their attitudes towards a decision-support tool for future amputation decisions. Methods An electronic survey was distributed between November 2023 and January 2024 to individuals with MLEA, identified via social media, healthcare professionals working with MLEA patients, and a non-profit patient organisation. In total, 49 individuals responded (27% female, 47% living alone, mean age 63, SD=15). The questionnaire covered four themes: experiences of the pre-amputation communication, preferences for SDM, discussion of different amputation levels and respondents’ viewpoints on the potential use of a decision-support tool. Descriptive statistics were used to analyse the questionnaire responses. Results 43% (n=21) of the respondents felt unprepared for a possible amputation, and 80% (n=39) did not know the surgeon beforehand. More than half (59%, n=27) were satisfied with the pre-amputation conversation, while 22% (n=10) were not. Most respondents (73%, n=33) wanted to be involved in the decision about amputation level, and 68% (n=28) believed a decision-support tool would be beneficial. Conclusions Patients undergoing MLEA generally want to be involved in the complex decision-making process about amputation level and often are, but there is room for improvement. Discussing the risk of amputation earlier allows patients to prepare better and may facilitate easier engagement in SDM.