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



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.


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.


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.


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.



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)


  1. 1.
    Ayers DC, Franklin PD, Trief PM, Ploutz-Snyder R, Freund D. Psychological attributes of preoperative total joint replacement patients: implications for optimal physical outcome. J Arthroplasty. 2004;19(7 suppl 2):125–130.PubMedCrossRefGoogle Scholar
  2. 2.
    Baker P, Petheram T, Jameson S, Reed M, Gregg P, Deehan D. The association between body mass index and the outcomes of total knee arthroplasty. J Bone Joint Surg Am. 2012;94:1501–1508.PubMedCrossRefGoogle Scholar
  3. 3.
    Bellamy N, Buchanan WW, Goldsmith CH, Campbell J, Stitt LW. Validation study of WOMAC: a health status instrument for measuring clinically important patient relevant outcomes to antirheumatic drug therapy in patients with osteoarthritis of the hip or knee. J Rheumatol. 1988;15:1833–1840.PubMedGoogle Scholar
  4. 4.
    Centers for Disease Control and Prevention. National Hospital Discharge Survey: 2009 table, procedures by selected patient characteristics - number by procedure category and age. May 2012. Available at: Accessed February 2013.
  5. 5.
    Collins NJ, Roos EM. Patient-reported outcomes for total hip and knee arthroplasty: commonly used instruments and attributes of a “good” measure. Clin Geriatr Med. 2012;28:367–394.PubMedCrossRefGoogle Scholar
  6. 6.
    Devlin NJ, Parkin D, Browne J. Patient-reported outcome measures in the NHS: new methods for analysing and reporting EQ-5D data. Health Economics. 2010;19:886–905.PubMedCrossRefGoogle Scholar
  7. 7.
    EuroQol—a new facility for the measurement of health-related quality of life: the EuroQol Group. Health Policy. 1990;16:199–208.Google Scholar
  8. 8.
    Franklin PD, Allison JJ, Ayers DC. Beyond joint implant registries: a patient-centered research consortium for comparative effectiveness in total joint replacement. JAMA. 2012;308:1217–1218.PubMedCrossRefGoogle Scholar
  9. 9.
    Franklin PD, Li W, Ayers DC. The Chitranjan Ranawat Award. Functional outcome after total knee replacement varies with patient attributes. Clin Orthop Relat Res. 2008;466:2597–2604.PubMedCrossRefGoogle Scholar
  10. 10.
    Goodfellow JW, O’Connor JJ, Murray DW. A critique of revision rate as an outcome measure: re-interpretation of knee joint registry data. J Bone Joint Surg Br. 2010;92:1628–1631.PubMedGoogle Scholar
  11. 11.
    Greenbaum JN, Bornstein LJ, Lyman S, Alexiades MM, Westrich GH. The validity of self-report as a technique for measuring short-term complications after total hip arthroplasty in a joint replacement registry. J Arthroplasty. 2012;27:1310–1315.PubMedCrossRefGoogle Scholar
  12. 12.
    Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001.Google Scholar
  13. 13.
    International Society of Arthroplasty Registries. Statements (revised February 2007). Available at: Accessed May 21, 2013.
  14. 14.
    Jameson SS, Baker PN, Mason J, Rymaszewska M, Gregg PJ, Deehan DJ, Reed MR. Independent predictors of failure up to 7.5 years after 35 386 single-brand cementless total hip replacements: a retrospective cohort study using National Joint Registry data. Bone Joint J. 2013;95:747–757.Google Scholar
  15. 15.
    Lingard EA, Riddle DL. Impact of psychological distress on pain and function following knee arthroplasty. J Bone Joint Surg Am. 2007;89:1161–1169.PubMedCrossRefGoogle Scholar
  16. 16.
    New Zealand Orthopaedic Association. The New Zealand Joint Registry Thirteen Year Report: January 1999 to December 2011. Wellington, New Zealand: New Zealand Orthopaedic Association; 2012.Google Scholar
  17. 17.
    Nilsdotter AK, Petersson IF, Roos EM, Lohmander LS. Predictors of patient relevant outcome after total hip replacement for osteoarthritis: a prospective study. Ann Rheum Dis. 2003;62:923–930.PubMedCrossRefGoogle Scholar
  18. 18.
    Rising JP, Reynolds IS, Sedrakyan A. Delays and difficulties in assessing metal-on-metal hip implants. N Engl J Med. 2012;367:e1.PubMedCrossRefGoogle Scholar
  19. 19.
    Rolfson O, Karrholm J, Dahlberg LE, Garellick G. Patient-reported outcomes in the Swedish Hip Arthroplasty Register: results of a nationwide prospective observational study. J Bone Joint Surg Br. 2011;93:867–875.PubMedCrossRefGoogle Scholar
  20. 20.
    Rolfson O, Rothwell A, Sedrakyan A, Chenok KE, Bohm E, Bozic KJ, Garellick G. Use of patient-reported outcomes in the context of different levels of data. J Bone Joint Surg Am. 2011;93(suppl 3):66–71.PubMedCrossRefGoogle Scholar
  21. 21.
    Rothwell AG, Hooper GJ, Hobbs A, Frampton CM. An analysis of the Oxford hip and knee scores and their relationship to early joint revision in the New Zealand Joint Registry. J Bone Joint Surg Br. 2010;92:413–418.PubMedGoogle Scholar
  22. 22.
    van den Akker-Scheek I, Stevens M, Groothoff JW, Bulstra SK, Zijlstra W. Preoperative or postoperative self-efficacy: which is a better predictor of outcome after total hip or knee arthroplasty? Patient Educ Couns. 2007;66:92–99.PubMedCrossRefGoogle Scholar
  23. 23.
    Ware JE, Kosinski M, Bjomer JB, Turner-Bowker DM, Gandek B, Maruish ME. User’s Manual for the SF-36v2 Health Survey. 2nd ed. Lincoln, RI: QualityMetric Inc; 2007.Google Scholar
  24. 24.
    Wilcox S, Shumaker SA, Bowen D J, Naughton MJ, Rosal MC, Ludlam SE, Dugan E, Hunt JR, Stevens S. Promoting adherence and retention to clinical trials in special populations: a Women’s Health Initiative workshop. Control Clin Trials. 2001;22:279–289.PubMedCrossRefGoogle Scholar

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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