Preparation for amputation surgery is important for good health and wellbeing outcomes such as psychological adjustment, reduced anxiety, and mobility. However, people who have undergone amputation often felt unprepared for their surgery with little information given on how to prepare. This study aims to understand how people are prepared for amputation surgery, and how this can be improved by working with patients, charities working with amputees and healthcare staff to develop a new care pathway. This is being done across four phases:
Phase 1: Understanding current practices around preparedness
There were three elements to the first stage of the PreAmp study: a review of the existing literature on the preparation of patients for amputation surgery, a survey with healthcare professionals in the UK working with amputation patients, and qualitative interviews and online questionnaires with patients who underwent amputation surgery -major or minor- in the NHS. More than one-hundred healthcare professionals involved in amputation surgery and care replied to the survey on current experiences and practices around pre-operative preparation, and seventeen patients were interviewed and replied to the online questionnaires, sharing their experiences of preparation for this procedure. The findings of these research activities informed the second part of the study, an ethnographic study in two vascular wards, one located in the North of England and the other in South to account for the disparity of amputation surgery rates in these areas.
Phase 2: Co-Design in two NHS organisations
The second part of the PreAmp study involved two researchers carrying out an ethnographic study in two NHS organisations to observe current practices on vascular wards, conduct interviews with patients and healthcare staff, and hold co-design workshops with staff and patients. The team interviewed 19 patients and 29 healthcare staff, and carried out extensive observations of vascular team meetings and preparatory conversations with patients. Descriptive notes from observations and interviews fed into the co-design workshops, which aimed to decide collectively what the new care pathway would look like, and what resources were needed to help people prepare for amputation surgery.
Phase 3: Development of tools and recommendations
This phase involved the PreAmp team working with the patients and healthcare staff at both hospital sites to develop the new recommendations for a care pathway and to create new support resources for patients and staff. Patients and healthcare staff participating in the co-design workshops proposed different ideas of resources supporting patients’ psychological preparation for amputation surgery and helping healthcare staff to better support patients. Both patients and healthcare staff prioritised three support ideas: a video resource with patient stories from recent amputees that patients can read or watch, a peer-support sign up scheme, and a checklist for staff offering guidance to prepare conversations with patients facing an amputation to help stardardise that all aspects that might matter to patients have been covered.
Phase 4: Evaluation of new care pathway
Once the new resources and care pathway were made, the research team will implement them in a third NHS vascular ward located in the North of England, to evaluate how resources are used in practice and if they have helped patients feel more psychologically prepared. PreAmp researchers will observe patients engaging with the co-design resources, and will interview patients about their views and experience using the co-designed supporting materials. In addition, the team will hold a series of focus groups with healthcare staff involved in the care of amputees about how they found the staff supporting resources, and gather their feedback on how they have found the resources, including possible improvements.
Study background
Amputation is a growing health issue which are rapidly increasing with rising rates of vascular diseases, diabetes and an ageing population. Research has found that patients may experience substantial emotional distress following amputation surgery (Rybarczyk et al., 2004), including feelings of body image and self-identity distress, and grief of limb loss Senra et al., 2012; Atherton and Robertson, 2006; Maguire and Parkes, 1998). Additionally, patients may experience reduced quality of life through loss of work and less participation in social activities, increased levels of pain, psychological impacts, and increased mortality risk. Recent work has suggested that intervening at the earliest opportunity may reduce these experiences of psychological distress (Jo et al., 2021); however, there has been little focus on how individuals are psychologically prepared for amputation surgery. The Vascular Society of Great Britain and Ireland (VSGBI) states that ‘A well prepared patient carries a higher chance of a successful operation and return to independent mobility without hospital acquired complications’ (VSGBI, 2016: 2). However, the guidelines currently in place for the preparation for amputation focus largely on the physical prehabilitation with the aim of improving surgical and physiological outcomes. Research has shown that patients experience a lack of knowledge of the amputation procedure, the potential complications, and what to expect when living with an amputation (Pedlow et al., 2004; Torbjornsson et al., 2017). Moreover, improving communication between patients and healthcare professionals is important for helping patients to understand the process, form trust between staff and patients, improved adherence to self-care, and improved overall health and well-being (Street et al., 2009). Therefore, providing patients with this information and improving patient-healthcare professional communication could improve patients feelings of preparedness and improve patient outcomes. Despite this evidence regarding the potential benefits of well-prepared patients for surgery, we still know little about the experience of preparation and how pre-amputation care can be improved for the psychological preparation of patients.