PERCEIVE Study

Prediction of risk and communication of outcomes following major lower limb amputation: a collaborative study.

Background

Having a leg amputation is a high-risk life changing event and deciding whether to have an amputation or not can be extremely difficult. For patients with extensive foot wounds and/or pain (due to diabetes, or arterial blockages), this may involve balancing up the risks and benefits of surgery with continuing as they are. If very elderly patients develop limb problems which are only treatable by amputation, patients (and relatives/carers) face a difficult decision of surgery versus palliative symptom control.
Decision-making

Making the right decision at the right time is crucial. The wrong decision can result in a reduced quality of life, patient and/or family regret, increased NHS costs, and reduced rehabilitation engagement. In many areas of medicine, such as cancer treatment, tools are used to determine patient prognosis, risks of surgery, and probable outcomes, which is crucial in successful shared decision making. Amputation surgery is almost completely lacking these aspects, and as a result, there is marked variation in amputation practice across Wales (and the UK).

This work will look in detail at amputation risk perception, communication and decision-making, both from a patient/family and a surgeon/clinician point of view. At the centre of PERCEIVE is the patient asking, “What is likely to happen to me if I have (or don’t have) my amputation?”.
Clinical predictions

We will measure how accurate clinicians are at predicting, at the time of surgery, the risks of death and surgical revision (of the amputation stump), and chances of walking again (with a prosthesis), by comparing their predictions with what actually happens.

We will also measure how well currently available risk prediction tools predict these outcomes.
Consultations and decision-making

We will audio-record consultations between surgeons and patients, examining the communication and decision-making process, and conduct individual follow-up interviews. We will identify what is important to patients, what information they need to make an informed decision and how best to communicate that information. Interviews of surgeons, anaesthetists and specialist therapists will explore how they estimate risks and outcomes of amputation surgery, and how they communicate this.
Discussion groups

We will collate all this information together with patients and clinicians in discussion groups, to identify key areas around amputation decision-making which can be improved, and how best to further examine those areas.