Another Key Challenge: Maximizing Patient Participation
The 2016 annual report from the California Joint Replacement Registry (CJRR) (which has since been merged into the AJRR), shows that among participating hospitals, only 16.6% of the 21,167 who had surgeries, or 3,513, completed both the pre-operative and the post-operative surveys. (See: http://ajrr.net/images/annual_reports/CJRR_16_Annual_Report_PRO_Public_Reporting.pdf)
This 16.6% figure was despite the fact that there were multiple ways for patients to enter data. They could take PRO surveys online using a secure CJRR web-based interface (on a phone, computer, or tablet), or a paper form could be securely faxed.
For those who did complete all surveys, across all participating hospitals, 80.1% (lowest) to 91.7% reported significant improvement in their Western Ontario & McMaster Universities Osteoarthritis Index (WOMAC) scores as a result of their surgeries. Using two other scoring systems (Veterans Administration VR-12, which includes both physical and a mental components) and a UCLA activity score, improvements were also dramatic.
What It Takes to Derive Full Benefit From a Registry: Sweden’s Experience (1), (2)
Will enough U.S. hospitals, surgery centers, and physician practices pay the annual subscription costs, then go to the trouble of entering all that data, and then wait—years, if they are early users of a new registry—until there’s enough data in the registry to draw conclusions about best practices, best devices, et cetera? AAOS, NASS, AOA, and others are betting that they will.
Deriving benefit from registries takes far more than just sending in data. Next comes analysis of the data, then subsequent decisions on best practices based on the data analysis, and then multi-year analyses of the new results.
In Sweden, “The key to success has been yearly feedback to all units (all healthcare provider sites) and yearly conferences,” says the Swedish presentation cited below.(1)
Even the most advanced U.S. registries here are just getting started on this path.
Alas, with significant differences between the Swedish and U.S. populations, the Swedish experience can’t simply be cloned here.
In addition to having a national healthcare system, which pays for the registries and can mandate participation, Sweden has a population of 9.5 million, which is much less ethnically diverse than the U.S. population. So, a smaller set of data is probably sufficient there.
Also, obesity stresses joints. Sweden is the sixth least obese country in the world, according to a 2017 OECD report,with a 12.3% obesity rate among adults.
Footnotes cited above:
- Sweden’s hip arthroplasty registry has defined international best practice,” says the headline on page 32 of a presentation titled, “Swedish National Quality Registries and Their Contribution to the Best Possible Care for Patients” at the BMJ’s April 2016 International Forum on Quality and Safety in Healthcare, in Gothenberg, Sweden.
- “It is credited to the pioneering work of the [Swedish Hip Arthroplasty Registry] that the revision rate following hip replacement surgery in Sweden is amongst the lowest in the world. This has been accomplished by the diligent follow-up of patients with feedback of outcomes to the providers of the healthcare along with post market surveillance of individual implant performance.” – BMC Musculoskelet Disord. 2016; 17: 414. Published online 2016 Oct 4. doi: 10.1186/s12891-016-1262-x.
A Benefit Already in Place: The Very Cool AAOS Hip-Knee Risk Calculator
The AAOS website has an AJRR page which calculates risks of two complications of knee or hip surgery: death within 90 days and infection in the joint within two years.
The calculator takes into account the procedure, a list of comorbidities the patient might have, and the patient’s gender, age, and race.
The page warns against a patient self-taking the risk calculator.
So, naturally, I did. Assuming that I’m correct about my comorbidities (I confessed to none), my risk of death and infection were close to zero, should I need a hip joint replacement.
Cut six inches from my height and add 120 pounds (effectively making me quite obese), and randomly add the comorbidity factors of alcohol abuse, cardiac arrhythmia, congestive heart failure, chronic liver disease, depression, diabetes, drug abuse, hypertension, ischemic heart disease, peripheral vascular disease, psychosis, and renal disease, and my risk of death within 90 days would rise to 7.5%, and risk of infection within two years to 9%.
Given that 7.5% risk of death right away, plus the additional risk of death in the subsequent year or two, and add to that the risk of infection, and you’d probably persuade that obese, sick version of me to stay in that wheelchair and forego the surgery.
A calculator caveat: “The estimated risk is not adjusted for the doctor, device or hospital.” (All are additional factors which would be in the registry for the participating caregiver). Feedback on those additional factors could lead to a small and useful set of choices as to what the individual physician or hospital might improve.
Try it yourself: http://riskcalc.aaos.org/index.html.
