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Clinical Orthopaedics and Related Research®

, Volume 471, Issue 11, pp 3482–3488 | Cite as

Incorporating Patient-reported Outcomes in Total Joint Arthroplasty Registries: Challenges and Opportunities

  • Patricia D. Franklin
  • Leslie Harrold
  • David C. Ayers
Symposium: ABJS Carl T. Brighton Workshop on Outcome Measures

Abstract

Background

Total joint arthroplasty (TJA) registries traditionally have focused on implant longevity and rates of revision surgery. Registries would benefit from the addition of standardized patient-reported outcomes (PROs) such as pain relief and improved physical function. However, PROs have not been routinely adopted, and their incorporation into TJA registries presents challenges.

Questions/purposes

We review current PRO use by existing national registries, challenges to integrating PROs in national registries, lessons from national registries that have integrated PROs, and suggestions to guide future adoption of PROs.

Methods

We conducted a literature search of papers addressing PRO use in national knee and hip arthroplasty registries, resulting in 15 articles. These publications were supplemented by discussions with thought leaders from international registries.

Where Are We Now?

Some national TJA registries are collecting PROs and valuable research is emerging. However, challenges exist, such as selecting suitable PROs, selection bias in countries without government-mandated participation for all hospitals, and challenges with missing data.

Where Do We Need to Go?

The ideal system will incorporate PROs into TJA registries. In so doing, it will be important to choose suitable PROs and develop innovative methods to collect PROs to ensure complete data and sustainability.

How Do We Get There?

New methods are required to meet the challenges related to registry design, logistics of PRO collection, and registry cost and sustainability. Modifications to the traditional hospital- and implant-centric design and new procedures to collect complete data from both patients and clinicians may be necessary. For instance, England and Wales, New Zealand, and Sweden developed methods to collect PROs after TJA directly from patients and a US TJA registry collects PROs as the primary outcome. Finally, to assure long-term sustainability, PRO data must be valuable to multiple stakeholders, including patients, clinicians, researchers, and policy makers.

Keywords

Electronic Health Record Unicompartmental Knee Arthroplasty Total Joint Arthroplasty Comparative Effectiveness Research Computerize Adaptive Testing 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Acknowledgments

The authors acknowledge the broad team of investigators who have contributed to the design and implementation of the FORCE-TJR model, including Jeroan J. Allison MD, Wenjun Li PhD, Milagros C. Rosal PhD, Bruce Barton PhD, Sharina Person PhD, John E. Ware PhD, Courtland Lewis MD, Philip Noble PhD, Regis O’Keefe MD, PhD, and Vincent Pellegrini MD. In addition, FORCE-TJR is dependent on the ongoing collaboration of more than 100 surgeons who willingly allow enrollment of their patients. We also acknowledge Sylvie Puig PhD for her editorial contributions.

Supplementary material

11999_2013_3193_MOESM1_ESM.doc (32 kb)
Supplementary material 1 (DOC 31 kb)

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Copyright information

© The Association of Bone and Joint Surgeons® 2013

Authors and Affiliations

  • Patricia D. Franklin
    • 1
  • Leslie Harrold
    • 1
  • David C. Ayers
    • 1
  1. 1.Department of Orthopedics and Physical RehabilitationUniversity of Massachusetts Medical SchoolWorcesterUSA

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