Article Text
Abstract
Introduction Patients often feel excluded from amputation-level decisions,1 yet some desire active participation, even in unavoidable amputations.2 Shared decision-making (SDM) is not implemented in amputation level decisions in Denmark, and a decision support tool is not available in Danish. This study explored patients experiences with information, communication, SDM, and their attitudes toward a potential decision support tool.
Method An electronic survey was distributed Nov-Dec. 2023 among patients living with a major lower limb amputation, recruited through a patient association (n=25 (inclusion ongoing), 22 men, mean age 62). The questionnaire covered four domains, known to influence implementation of SDM3: 1) Environmental Context and Resources, 2) Social/Professional Role and Identity, 3) Knowledge and Skills, and 4) Beliefs about Capabilities. Furthermore, respondents’ experiences with information and communication, was explored.
Preliminary Results In general, 60% were satisfied with the conversation regarding their amputation and 20% were unsatisfied. In all, 68% had the information they needed; and 76% claimed a decision support tool to use in the conversation about where on the leg to amputate, would be beneficial to them as patients. The surgeons were experienced as open to talk about amputation as an option by 44%, and 32% experienced that it was okay to disagree with the surgeon. Half of the participants (52%) experienced that there was time to talk about the topics/issues that they wanted to talk about.
Discussion Even though patients were satisfied with the conversation and amount of information received, the majority thought a decision support tool would be beneficial. Desire for participation in SDM are in line with earlier studies.4
Conclusion Implementing SDM and a decision support tool could benefit patients need for conversations and information about amputation levels.
References
Leonard C, Sayre G, Williams S, et al. Perceived shared decision-making among patients undergoing lower- limb amputation and their care teams: a qualitative study. Prosthetics and Orthotics International. 2023;47(4):379–386.
Columbo JA, Davies L, Kang R, Barnes JA, Leinweber KA, Suckow BD, et al. Patient Experience of Recovery After Major Leg Amputation for Arterial Disease. Vasc Endovascular Surg. 2018;52(4):262–8.
Waddell A, Lennox A, Spassova G, Bragge P. Barriers and facilitators to shared decision-making in hospitals from policy to practice: a systematic review. Implementation Science. 2021;16(1):74.
Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Educ Couns. 2014;94(3):291–309.