Issue: December 2018
December 03, 2018
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Orthopaedic registries with patient-reported outcome measures

Issue: December 2018
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EFORT

Each edition of the EFORT Annual Congress is an independent project intended to deliver medical education on practice and research to the biggest orthopaedics and traumatology audience in Europe.

To reach this ambitious goal of providing the best knowledge and guidance, the EFORT Science Committee builds a scientific program around the new concepts and cutting-edge evidence from mentors who have the best experience in the field, which is then shared via the most effective, attractive and interactive exchange. In the same sense, EFORT yearly distributes to each attendee a publication with state-of-the-art information and outstanding data to ensure extensive scientific teaching via both oral and written materials. Since 2016, the open access journal EFORT Open Reviews (EOR), the official journal of EFORT, includes in a special congress edition several peer-reviewed manuscripts to endorse the content of the main topics highlighted in the meeting program. Next year, the EOR edition available in Lisbon will thus have a special focus on Registries & Impact on Practice, our congress main theme.

Since 1975, when the first nation-wide orthopaedic registry was created in Sweden, many European countries, as well as the United States, struggled to establish their own medical implant registries because of a lack in strategies for broad data collection and the need for more structured criteria to define the outcomes. Revision surgery is the traditional endpoint of registries, but it seems insufficient as a measure of success since only 80% of knee replacement patients and 90% of hip replacement patients are satisfied postoperatively. Patient-reported outcome measures (PROMs) move beyond implant survival as a focus in order to measure outcomes relevant to patients — relief of pain, restoration of function and improvement in quality of life. PROMs data is usually collected via a patient-completed paper or electronic-based questionnaire. In the case of electronic data, the collection can be performed with a computer, a tablet or any other hand-held computing device, such as a phone, or with the help of a web-based survey tool. The exact procedure to include the data collected in a registry is not standardized and different formats — charts, graphs, and numerical tables — are used. Preoperatively, it is recommended that the patient who has decided to undergo surgery completes the questionnaire at least 3 to 4 weeks prior to their surgery. After a hip or knee replacement, patients are requested to fill in the questionnaire at the minimum of 1 year postoperatively, despite the fact guidelines are missing regarding the length of the follow-up.

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Among the main preoperative factors to be considered in evaluation of satisfaction after joint replacement, it is worthwhile to highlight age, sex, diagnosis, preoperative quality of life, mental health, expectations, pain catastrophizing, as well as medical and musculoskeletal comorbidities. Generally, worse preoperative scores are associated with worse postoperative outcomes. However, patients with worse preoperative scores tend to have larger improvements following surgery compared to those with less severe diseases before surgery.

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Two types of PROs exist: generic PROs that are related to a patient’s general health and quality of life and specific PROs that are focused on a particular disease, symptom or anatomic region. Collection of PROMs data can provide important information to enable value-based care decisions, support quality assurance and improvement initiatives, refine surgical indications and improve shared decision-making regarding surgery. While the collection of PROMs requires thoughtful implementation and can be labor intensive, these are increasingly being used in many national and regional orthopaedic arthroplasty registries. Nevertheless, their inclusion differs among registries. In some cases, the guiding principle is that data should be collected from all patients listed in the registry, but this is difficult to achieve and even the most experienced teams may only succeed to complete the process 90% of the time. Alternatively, other orthopaedic registries may choose only a sample of patients on which to collect PROMs.

Dr. Ian Robert Wilson, clinical fellow in Adult Hip and Knee Joint Reconstruction, and Dr. Eric Bohm, professor of surgery, at the University of Manitoba, Winnipeg, Canada, are the primary authors of the Instructional Lecture entitled “Orthopaedic registries with patient-reported outcome measures,” which is part of our Lisbon special EOR edition. Significant contributions to the work were also provided by the PROMs Working Group members of the International Society of Arthroplasty Registers.

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This extensive review article will contribute to the general understanding on how the outcomes of joint replacement surgery (longevity, complications, etc.) have improved during the past several decades as a result of tracking outcomes in registries and feeding this data back to providers. Some of these improvements are likely a result of improvements in the implant designs themselves (eg, use of crosslinked polyethylene in hip replacement surgery), while others are directly linked to better perioperative care. In this context, capturing PROMs is equally important to improve hip and knee replacement care because these surgical procedures are originally carried out to benefit patients by enhancing their joint function while reducing pain.

The EFORT Open Reviews 2019 Congress special edition is available to all the delegates fully registered for the EFORT Congress without any extra fee to be paid. All details to sign-up for the Lisbon meeting will be available on our registration platform as of January 2019.