Patient Preference and Adherence (May 2021)
Stakeholder Values and Preferences in Lower Limb Amputation for No-Option Chronic Limb Threatening Ischemia
Abstract
Jelle A Nieuwstraten,1 Louk P van Doorn,1 Winifred A Gebhardt,2 Jaap F Hamming1 1Department of Vascular Surgery, Leiden University Medical Center, Leiden, the Netherlands; 2Health, Medical and Neuropsychology Unit, Institute of Psychology, Leiden University, Leiden, the NetherlandsCorrespondence: Jelle A NieuwstratenDepartment of Vascular Surgery, Leiden University Medical Center, Postzone K6-R, Postbus 9600, Leiden, RC, 2300, the NetherlandsTel +31 618849873Email [email protected]: This study focusses on identifying values and preferences of patients, caregivers and healthcare professionals who have dealt with lower limb amputation for no-option chronic limb threatening ischemia. No-option chronic limb threatening ischemia is defined as limb ischemia for which no treatment options exist and where lower limb amputation is necessary in the short term. The values and preferences identified in this study can help improve decision-making processes.Patients and Methods: This was a qualitative study, using semi-structured interviews to gather data from patients, caregivers and healthcare professionals. Participants were selected from the patient and employee population of an academic medical center in The Netherlands. Nine patients and seven caregivers who dealt with lower limb amputation for no-option chronic limb threatening ischemia six to twelve months prior to the interview and were not cognitively impaired were selected. Nine healthcare professionals dealing with patients with no-option chronic limb threatening ischemia and lower limb amputation were selected.Results: Lower limb amputation was explicitly discussed late in the disease process, sometimes during an emergency setting. Patients stated goals were never discussed, healthcare professionals stated they were. The most important goal for patients was to live independently after lower limb amputation. Patients and caregivers feel healthcare professionals should be upfront about the possible necessity of lower limb amputation. Reasons to undergo lower limb amputation were absence of treatment options, pain and wanting to enjoy life again. Participants indicated accelerating lower limb amputation was not a viable option.Conclusion: All stakeholders reported overlapping values and preferences regarding main reasons for lower limb amputation, the primary goals after lower limb amputation, and the absence of a desire to accelerate lower limb amputation. The main difference in values and preferences is the preferred timing of discussing lower limb amputation.Keywords: vascular surgery, shared decision-making, SDM, communication