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What can patients learn from the experiences of people like them who’ve already had a hip replacement? A new tool called ‘Patients like me’ helps answer some of the questions about pain, complications and how long the prosthesis might last.

Patients like me leaflet

A new patient-friendly tool to help reassure people about total hip arthroplasty (THA) has been launched by researchers at NDORMS and Geneva University Hospitals in Switzerland. Called "Patients like me", the information materials will help patients assess the harms and benefits of hip replacement and make informed decisions based on the experiences of patients similar to them who have already had the procedure.

Rafael Pinedo-Villanueva, Associate Professor at NDORMS explained: "There is a wealth of data collected from patients that undergo hip replacement treatment, but none of this is returned back to patients that are due to have the procedure. We recognised that it would be very powerful to present that information to people so that they could benefit more directly from the experience of previous patients with the same personal and medical profiles.

"For example, a 65-year-old woman with pain in one hip and some other underlying conditions might wish to know how others like her experienced pain after the operation, what level of activity she could get back to, and what the risk of reinfection or fracture could be over time. It makes for a much better conversation between patient and surgeon about the procedure and follow up treatment."

To create the tool Rafael worked with Anne Lübbeke-Wolff, Professor and Clinical Researcher in Orthopaedics and Trauma Surgery at Geneva University Hospitals where the Division of Orthopaedics had been collecting patient data to an arthroplasty registry for 25+ years. As Lead of the Geneva Arthroplasty Registry, Anne has collected detailed information about the patients' characteristics before surgery, about the surgery itself and the patients' short-, mid-, and long-term experiences with their hip prosthesis, and this formed the basis for the tool.

Anne said: "Registry data are an invaluable source of information for patient care and shared decision-making, medical device and surgical procedure monitoring, research, hospital care processes, and public health decision-making. Their importance is more and more recognised and new areas of use of registry data are developed, one of them being this project."

The development of the tool was completely process led. Before the registry was analysed, several hundred prospective patients were asked which benefits and risks associated with the operation and daily life with the prosthesis they perceived as most important. Their answers indicated pain relief, activity improvement, complications, and what to expect in the future as most important topics. The tool 'Patients like me' was designed around these four topics.

The tool is being used in Geneva during the patient-surgeon consultation both prior and after surgery," said Rafael. "The great majority of patients perform exceedingly well after surgery, but distinct groups with different outcomes can be identified and this information can help patients inform their expectation and treatment decisions."

Uncertainty about a prognosis can be a major source of stress for a patient. Mirroring past patients' experience to future patients is a different way of talking about prognosis with patients. The principle and methodology of this project are applicable to other medical conditions.

The feedback on the leaflet was generally positive for all patients. It was seen as interesting, clear, complete and pleasantly illustrated. A patient stated that she found it reassuring. Others felt that it was complementary to the information received by the surgeon.

Since sharing the findings of the research and implementation of the tool at the Geneva Hospital, the team has been approached by colleagues in the UK, Denmark, US, Canada, Ireland, and Germany to explore ways to create a similar tool using data from their own registries.

Listen to Rafa and Anne tell us more. 

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