ArthritisPower App: 11,000 Patient Registry; #1 Reason for Hip Replacement Success; and #1 Reason for Knee Replacement Failure
Elizabeth Hofheinz, M.P.H., M.Ed. • Thu, September 28th, 2017
ArthritisPower App: 11,000 Patient Registry
Patient-led research registry? There’s an app for that.
ArthritisPower, the first patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions successfully completed enrolling 11,000 arthritis patients. ArthritisPower was created by CreakyJoints, an online resource for information and support.
In its September 11, 2017 news release, CreakyJoints announced that this enrollment means that it has fulfilled one of its primary contract requirements with the Patient-Centered Outcomes Research Institute (PCORI) more than 12 months ahead of schedule.
“ArthritisPower is a free science-based, privacy-protected web and mobile app for iPhone and Android devices that allows patients to track their symptoms and treatments while simultaneously participating in arthritis research.”
“Since launching a completely refreshed and advanced version of ArthritisPower in March 2017, over 8,500 patients joined the community and have already logged more than 80,000 patient reported outcome measures.”
“ArthritisPower is part of PCORnet, the National Patient-Centered Clinical Research Network, developed with support from the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit, nongovernmental organization authorized by Congress in 2010. Its overall goal is to support clinical research that will enhance informed health care decision making and improve health care delivery.”
“…Researchers from elite universities and research organizations nationwide, such as Johns Hopkins University, Duke University, Yale University, University of Alabama at Birmingham, and others, access the ArthritisPower research registry to inform their studies. Resulting data (past and forthcoming) is anonymized and focuses on the patient experience of arthritis to better understand patient preferences related to disease management as well as with traditional and complementary therapies. Already, data derived from ArthritisPower has been presented at major medical meetings such as the American College of Rheumatology and the European League Against Rheumatism, and is slated for future peer-reviewed publications.”
Seth Ginsberg, president and co-founder of CreakyJoints and a principal investigator of ArthritisPower, told OTW, “ArthritisPower is going to be a powerful tool to understand patient perspectives before and after arthroplasty. While it’s true that devices, surgical technique and recovery plans have improved, the study of joint replacement has been driven by surgeons and device makers. What’s missing is a better understanding of patient preferences, particularly regarding what they value when making the decision to undergo surgery, pick a surgeon and select a device. The good news is that this research is underway by patient-led research communities, such as ArthritisPower. Patients need to be at the center of research to guide healthcare decision making.”
As the company wrote in its news release, “In addition to participating in studies, simultaneously, patients are completing verified self-assessments, such as the RAPID3 as well as others related to sleep, physical function and pain. As they enter their patient reported outcomes, they can track results over varying durations of time and overlay their usage of medications to see when a new treatment impacts their symptoms. Their personal data can be directly emailed to their provider in advance of an appointment to encourage data driven conversations about treatment and management strategies.”
Ginsberg told OTW, “When we built ArthritisPower, we immediately saw the need for more education and explanation for the patients about their disease and disease management options. Some of this information was already available on the CreakyJoints website. But we wanted to go farther and create in-depth resources for patients. The next milestone is the creation of patient guidelines for arthroplasty, which we hope will publish by the end of 2017.”
“We initially published patient guidelines for rheumatoid arthritis, and then followed those with AS, PsA, and now osteoarthritis and arthroplasty. Our growing library of patient guidelines provide unbiased information about diagnosis, management and treatment, including traditional, alternative and complementary therapies. They also provide patient guidance regarding how to communicate with physicians, insurance companies and legislators.”
“In addition, future milestones include additional ArthritisPower studies that are being developed specifically for joint selection and safety studies, as well as to support patient needs pre- and post-operation to optimize outcomes. We want orthopedic surgeons to know that patient-centered research has evolved a lot in the past few years. While ArthritisPower was originally built for autoimmune arthritis patient-centered research, we are actively engineering more focus on osteoarthritis and arthroplasty patient needs.”
#1 Determinant of Hip Replacement Success
No, it’s not the surgeon.
A new study looked at this question and found a surprising answer.
Their work, “The Influence of Arthritis in Other Major Joints and the Spine on the One-Year Outcome of Total Hip Replacement: A Prospective, Multicenter Cohort Study (EUROHIP) Measuring the Influence of Musculoskeletal Morbidity,” appears in the September 6, 2017 edition of The Journal of Bone & Joint Surgery.
Joerg Huber, M.D. with the Department of Orthopedics at Stadtspital Triemli in Zurich, Switzerland, commented to OTW, “We have seen different outcomes after total hip replacement, which could not be explained. With a new statistical method (published 2013), the relative effect per patient (REPP), the outcome can be analyzed more precisely; the outcome can be calculated as a number (1= excellent, no complaints, 0= unchanged).”
The authors wrote, “The EUROHIP study consists of 1,327 patients undergoing primary total hip replacement for arthritis across 20 European orthopaedic centers. The primary outcome was the responder rate at 12 months calculated with the relative effect per patient for total hip replacement using the total Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) score.”
“The primary predictor of interest was different combinations of arthritis of major joints and the spine grouped into 4 musculoskeletal morbidity grades: 1 (single major joint), 2 (multiple major joints), 3 (single major joint and spine), and 4 (multiple major joints and spine)…”
“We knew from daily experience that other major joints and the spine can influence the outcome. With a simple grading system (1 to 4) the patients could be separated in 4 different ‘arthritis stages’ including other major joints and spine. The combination of new method and new grading system of major joints/spine allowed this study.”
“The data were collected in 24 clinics prospectively and also for the other major joints. The method and the grading system were developed a little later and then used for the first time in this large multicenter cohort.”
“Three main confounders for outcome were found: the most important is the state of other major joints/spine, second the influence of depression, third the ASA score (as grade of comorbidities).”
“The state of other affected major joints and spine should be assessed and documented before treatment/surgery (in one of the 4 grades). E.g. osteoarthritis left hip (MSM grade 1) = only one affected major joint = expectation for a good to excellent result. The patient’s expectations can be adapted in grades 2, 3, and 4; nevertheless also patients of grade 4 have a good outcome.”
“The different grades should be considered in the daily routine treatment of patients with affected joints/spine. The patients and their musculoskeletal system should be seen as one entity.”
Infection is #1 Cause of TKA Failure
New work from New Zealand finds it helpful to look beyond joint registries when trying to get a clearer understanding of knee arthroplasty (TKAs) failures. “Periprosthetic Joint Infection Is the Main Cause of Failure for Modern Knee Arthroplasty: An Analysis of 11,134 Knees,” was published in the September 2017 edition of Clinical Orthopaedics and Related Research.
Simon W. Young, M.B.Ch.B, F.R.A.C.S., an orthopedic surgeon and senior lecturer at the University of Auckland, was a co-author on the study. He told OTW, “Like all knee surgeons we are interested in improving outcomes in primary TKA [total knee arthroplasty] patients. However, in order to do this it is important to first understand the causes of TKA ‘failures’ (revisions), and their relative importance.”
“Joint registries are good at identifying when TKAs are revised, but without clinical notes and X-rays the cause of the revision is not well picked up. Large series of revision TKAs from tertiary referral centres are good at picking up why knees are revised, but as they only include cases the have been referred they may not get a true estimate of the relative importance of each failure mechanism. We therefore set out to follow a large series of primary TKAs over a 15 year time period, and to accurately identify the causes of failure in those patients who were revised.”
“A key point was that we used not only local hospital records to track the 11,000 patients, we also identified patients who had been revised at other hospitals nationwide using the national joint registry. We then contacted the treating surgeons at those hospitals, obtaining the clinical data to allow us to identify the cause of failure. This sort of study is only really possible in a country like New Zealand, where all citizens have a national health number which enabled us to follow such a large number of patients over a long time period.”
“The cumulative 15 year incidence of revision was 6.1%. Periprosthetic joint infection (PJI) was the most important reason for failure (0.8% at 1 year, 2% at 15 years). The next most important reasons were aseptic loosening, patellofemoral resurfacing, instability, and stiffness. Aseptic loosening increases in incidence after 8 years.”
“While PJI is known to be the main cause of early revision, this study highlights that even out to 15 years it remains the number 1 cause of failure in primary TKA. We found PJI to be the dominant failure mechanism during the first 15 years after modern TKA. Aseptic loosening incidence increases after 8 years and it remains an important cause of failure, particularly in younger patients. Our efforts to improve outcome after primary TKA should focus on these areas, particularly prevention of PJI.”