AJRR Struggling to Find PROM Dates

Timothy Mojonnier owes his sanity to a walk around the block. The greater Chicago-area management consultant had been inching closer to the breaking point for years prior to that walk, courtesy of his steadily deteriorating knee. But each time Mojonnier found himself on the brink, he pulled himself back, convinced he could endure the pain for another day, another week.

Those days and weeks ultimately stretched into years.

Each passing year became harder to endure. Until one day—one normal, unremarkable day a few years ago—Mojonnier’s once steely resolve came to an abrupt halt. Just 20 yards into that walk around the block, Mojonnier reversed course and hobbled back home to ice his throbbing knee. The pain had finally become unbearable. 

“That was the tipping point,” Mojonnier wrote in a Jan. 9 blog on the American Joint Replacement Registry (AJRR) website. “The only questions that I had were these: What surgeon and which hospital should I select to do my knee replacement surgery?”

The answer wasn’t as obvious as easy as it might seem. Mojonnier scoured the internet for surgeon and hospital ratings, but was unimpressed with the data he found. A U.S. News & World Report hospital reputation survey, for instance, addressed staff friendliness but overlooked ambulatory surgery centers and community institutions. Physician information was equally as subjective, with criteria like doctor-patient time and communication skills superceding number/quality of knee surgeries performed.

Frustrated by the lack of quality data, Mojonnier resorted to word of mouth to find his surgeon. Luckily, he found one who restored his mobility, enabling him to take pain-free walks around the block (Mojonnier, in fact, tallied 22,000 daily steps during a two-year post-surgery family outing in NYC).

“I realized that I had better information about hotels and restaurants than I did about my health care choices,” Mojonnier gripes in his blog. “Isn’t the goal of orthopaedic surgery improving a patient’s symptoms and functioning? Wouldn’t information about a person’s pain levels and mobility be a better measure of healthcare quality than knowing the average number of minutes that a doctor spends with their patients?”

Indeed, patient feedback would be infinitely more helpful to knee replacement candidates than hospital staff cordiality or a doctor’s ability to answer questions (though some might argue the latter). But such data has only recently been made available, through a patient-reported outcomes platform launched by the AJRR in 2016.

The platform collects data through patient-reported outcome measures (PROMs)—basically, surveys that enable participants to assess their health through such criteria as mental/physical health status, function, systems, and quality of life. The PROM converts symptoms into numerical scores and quantifies surgeon results based on patient feedback. As Mojonnier notes in his blog, “PROMs close the loop between the treatment received, and the resulting level of satisfaction the patient experiences.”

AJRR actively promoted collection of four validated PROMs: Hip Disability and Osteoarthritis Outcome Score (HOOS/HOOS JR), Knee Injury and Osteoarthritis Outcome Score (KOOS/KOOS JR), Patient-Reported Outcomes Measurement Information System (PROMIS-10), and Veterans RAND 12 Item Health Survey (VR-12). PROM submission is strictly voluntary; institutions can elect to not collect the data, gather some of the suggested measures, or amass different information of their choosing.

AJRR leaders were expecting a rapid expansion of PROM data when the Centers for Medicare & Medicaid Services CJR bundled payment initiative took effect on April 1, 2016. But PROM collection and reporting remain a “work in progress” according the AJRR, with 41 of 654 sites (6 percent) submitting PROM data for the organization’s 2018 annual report. In addition, the completion rate for “linked” outcomes (where both a pre-op and one-year post-op PROM is available on the same patient) varies between 10.2 percent and 33.8 percent. “With neither a clear  mandate nor clear incentive to collect PROMs, and with unclear responsibility for their collection, PROM completion remains a challenging issue, especially with a mobile populace,” the report states.  

A study presented at the American Academy of Orthopaedic Surgeons annual meeting came to the same conclusion. The study covered differences between PROMs from submitters and nonsubmitters, and the response rates tallied so far for PROMs.

“PROM completion rates of 15 percent to 33 percent (depending on PROM) suggest that completion rates remain problematic for AJRR institutions, consistent with other studies,” the study authors wrote. “The true challenge of implementing PROMs in a registry while gaining and reporting meaningful results relates to data capture and response rates. Response rates for PROMs across orthopedics can be a challenge. So, while a provider may intend to achieve high response rates, collection of PROM surveys requires significant manpower dedicated to ensuring high completion rates, and may not yield a robust volume of PROM data.”

The authors concluded: “As more providers begin to incorporate PROMs into their care delivery model, further study is necessary to identify barriers and facilitators to use of registries for PROM measurement. Additional studies may further investigate mode of collection based on patient and institution characteristics, points of contact for collection, and provider buy-in and use of PROMs in patient interactions as factors related to data capture and response rates. Registries like the AJRR reflect the current state of adoption of using PROMs in clinical decision-making, performance improvement, and implementation of value-based payment and delivery models across institutions.”