Title: Making informed decisions before knee replacement: qualitative evidence base for a decision aid
Funder: Department of Health and Social Care

Abstract: Research question Helping patients to make informed decisions about their surgery is central to good care. Knee replacement is a common elective procedure, but there is no decision aid to enable informed decisions about this surgery. This study will address this gap by providing evidence to underpin a future decision aid to improve informed decision-making about knee replacement. Background Over 110,000 primary total knee replacements take place annually in the UK. Patients have this operation to reduce pain and improve function. This is a major operation with risks and potential benefits. Engagement in shared decision-making often means that patients become knowledgeable and comfortable with their choice. Decision aids are often promoted as a way to foster and support shared decision-making. Aims and objectives This study will provide evidence and a model to underpin a future decision aid to improve informed decision-making about knee replacement. The focus is on when patients meet with their surgeon to make the decision about whether they will be placed on the surgical waiting list. Objectives are to: i. Understand current practice in communication of risks and outcomes before knee replacement. ii. Identify and characterise information that patients and surgeons would like to help them make decisions. iii. Map findings from objectives i) and ii) alongside evidence about risk and outcome to produce a logic model to inform future design of a decision aid. Methods Work package 1: Analysis of current practice Qualitative data relating to current practice in communication of outcome and risk will be collected from 96 consultations at six hospitals across England and Wales. The research will focus on the surgeon-patient consultation, at which the decision is made about whether a patient will be placed on the waiting list to have knee replacement. Audio-recorded consultations will be analysed using framework approach to identify what information is shared. Work package 2: Identifying patients and surgeons preferences Results from WP1 will be used to identify what worked well and what might be done differently. Findings will be discussed in three focus groups with patients (n=18) and three focus groups with surgeons (n=18). Analysis will be thematic to deliver information about why information is shared and what could be changed. Work package 3: Development of a logic model Findings from WPs1 and 2 will be used to develop a logic model that can be used for future development of a decision aid. We will develop a Type 3 logic model to draw connections between factors and display how they work to produce outcomes. The model will represent information that should be communicated and discussed and provides the framework for fidelity and adherence assessment. Timelines WP1: months 1-11, complete month 11 WP2: months 12-15, complete month 15 WP3: months 16-19, complete logic model month 19 Anticipated Impact and Dissemination The study will produce a model to inform a decision aid tool. We will disseminate to clinical and research communities and will design further research to develop and evaluate a tool.

Lay abstract: Knee replacement is a common operation that involves removing the surfaces of a damaged knee joint and replacing them with an artificial joint. Over 100,000 people in the UK have a knee replacement each year, usually to reduce pain and increase their mobility because of osteoarthritis. Although most patients benefit from the operation we now know that around 1 in 100 patients will have a deep infection near their artificial knee joint, around 1 in 100 will have a blood clot, and 20 in 100 will have considerable ongoing pain. Although patients might expect some risks from surgery, our recent research suggests that many patients do not know before their operation that there is a one-in-five chance that they will have ongoing pain afterwards. While some feel that this knowledge would not change their decision to have knee replacement, they would have felt better prepared had they known that this was a risk, and if they then have pain after surgery they would have been more prepared about what to expect. This project aims to understand how information about how risk is communicated before an operation. This understanding will help us to make recommendations about how to improve communication before an operation. Improved communication will help surgeons and patients to decide about the operation in a more informed way. This will be done in three work packages: 1) Audio-recording consultations between patients and surgeons when they discuss the possibility of knee replacement. 2) Asking patients and surgeons how they would like to discuss risks, benefits and other aspects of recovery and outcomes. 3) Designing a framework (a model) to underpin future development of a tool to help patients and professionals to make decisions about knee replacement. The project will provide the information that is needed to design a future information resource that is ready for future testing and use in the NHS. The research will provide benefit to: Patients: they will be well informed about their operation, so that expectations match current evidence and their choice to have an operation is based on this. Surgeons and other health professionals: they will have guidance about areas to discuss in consultations to ensure that consent is fully informed. NHS: the NHS can have confidence that patients and professionals work together to make the most informed choices possible. The NHS has prioritised informed choice and decision making, and this study reflects this priority along with the views of patients who have told us that they need more information when making their decision about having knee replacement. The project will benefit from patient views throughout the research through input from a patient forum of individuals who have had experience of knee replacement.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: MUSCULOSKELETAL