Title: Improving psychological preparedness for amputation surgery: co-designing, implementing and evaluating patient-centred care pathways.
Funder: Department of Health and Social Care

Abstract: Background Rates of amputations are currently rising, due to the increased incidence of diabetes and vascular disease. Amputation is life altering, and the experience can bring a raft of psycho-social challenges to patients. Mortality rates for amputees remain high and care for amputation has been recently criticised; only 44% patients were identified as having received good care and consent procedures were reported as poor. Patients identify they would like greater information about the amputation procedure, believing this would help reduce their anxiety about the surgery. The disposal of the limb after the amputation is also seen as potentially important to some patients, but routinely patients report not having an opportunity to enact their wishes around disposal. Aims and objectives This project aims to explore how preparation for amputation can enhance patient experiences and outcomes by co-designing, implementing and evaluating a patient-centred care pathway for surgical amputation care. MethodsThe project will primarily take a qualitative approach, embedding the experiences and involvement of patients at its centre and structured around four related work packages: A scoping survey of acute hospital trusts as well as qualitative interviews with staff within a sample of acute hospitals will be conducted to establish current practices around how patients are prepared for amputation surgery. This will focus on how information is provided and consent taken, how disposal of the limb is discussed, and how mortality risks are conveyed. Using an Experience-based Co-design process, patients and staff will co-design a care pathway around psychological preparedness that is both meaningful to patients and feasible for staff. This phase will involve filmed narrative interviews, ethnographic observations and facilitated workshops. Coproduction of guidelines for clinical staff and healthcare professionals around best practice for patient preparedness and an online health talk module for patients that will provide information and resources to help with patient preparation that is available and accessible to all. Using Normalisation Process theory (NPT), interviews with patients and staff in two further acute hospitals will be conducted to explore acceptability of the intervention and potential process and outcome measures for use in a future evaluation. This will assess how the co-designed care pathway could be adopted across the NHS.Impact and disseminationThrough the co-design approach the research will produce an integrated care pathway, that can be embedded in standardised care, that is focused on consent, disposal of limbs and conveying risk as a means of facilitating patient preparedness for their surgery. This will lead to improved outcomes for patients, who will be better informed, aware of their choices and more involved in their care. This improved preparation of patients will help with their adjustment to amputation and engagement with their rehabilitation, thus leading to reduced costs to the service in the long term. Key findings of the project will be disseminated through academic publications, conference presentations, a final report and slide set for sharing across the NHS, an infographic for charities, as well as sharing of findings through social media and video outputs.

Lay abstract: Ensuring that patients who are going to have a limb removed by amputation are fully prepared for their surgery is important as this can help patients feel informed about what will happen and help improve how they recover afterwards. Making sure that patients understand the risks of their surgery, are clear about what they are consenting to, and have had the opportunity to think about how their limb will be disposed of can potentially help improve their rehabilitation. . From conversations with patients and the public, we learnt that amputation patients would like more information and greater choice about their care. Losing a limb can feel like a bereavement for some patients and many find coming to terms with amputation difficult. Some patients will experience depression and anxiety after their amputation. There are high mortality risks from having an amputation, so ensuring patients are well prepared for surgery is very important. If patients fully understand the risks of surgery they may also be more prepared to help with their own recovery. Improving care for patients undergoing amputations is important as this has previously been criticised. Preparation for surgery currently focuses mostly on physical preparation, rather than psychological preparation. The experiences and views of patients are central to the research project so we will work closely with patients, families and staff to develop and try out new ways of preparing patients for amputation surgery. This will involve the following: 1.A survey of all acute hospitals in the NHS followed by interviews with hospital staff and observations of current practice in 9 hospitals to understand how psychological preparation for surgery is currently done. This will help us understand what works well and what could be improved.2.Working with patients and staff in two hospitals to develop ways of improving patient preparation for amputation surgery. This will focus on improving patient information, how the risk of surgery is shared with patients and include giving patients more choice about the disposal of their amputated limb(s).3.Developing guidelines about best practice for healthcare professionals4.Developing online resources for patients to access to help with their psychological preparation for amputation surgery 5.Testing out the new way of preparing amputation patients in two different hospitals to see if it does help improve patient experiences and care and whether it could be used in all hospitals to improve patient preparation for their amputation surgery. A patient advisory group will be set up at the start of the project and they will advise on all stages of the research. We will hold a final meeting towards the end of the project to bring together the staff and patients from the hospitals involved in the research and others interested in this topic to share our findings and listen to their ideas as to how to make them widely available. We will share our findings in a variety of ways, including developing online patient information and guidelines for healthcare professionals. This will enable us to make sure our research is accessible to and understood by different groups of people. The research will help patients to be more involved in decision making and have more information about their care; we hope this will have positive benefits on how prepared patients feel for their amputation surgery and that this will help them during their recovery.

Research activity codes: 6.4 SURGERY;7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE;MENTAL HEALTH