Advertisement

Substantial Loss to Follow-Up and Missing Data in National Arthroscopy Registries: A Systematic Review

      Purpose

      To report follow-up methodologies, compliance, and existing strategies for handling missing data in national arthroscopy registries collecting patient-reported outcome measures (PROMs).

      Methods

      Annual reports, EMBASE, and MEDLINE were queried following the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines to identify national arthroscopy registries reporting follow-up with a validated PROM and sample size greater than 500. Extracted data included weighted compliance in peer-reviewed publications, cumulative compliance throughout the time span of data collection, and missing-data methodologies.

      Results

      Nine national arthroscopy registries currently collect PROMs, with cumulative rates of follow-up ranging from less than 10% to more than 70%. We identified 36 publications from 5 national registries reporting hip and knee arthroscopies. The weighted mean compliance with PROMs in national registry publications was 56% at 0.5 years, 44% to 59% at 1 year, 40% to 61% at 2 years, 35% to 54% at 5 years, and 40% at 10 years. A missing-data analysis was reported or referenced in 58% of publications.

      Conclusions

      In national arthroscopy registries, compliance with 2-year PROMs does not meet traditional follow-up thresholds of 60% or 80% and reporting of missing-data methodologies is inconsistent.

      Level of Evidence

      Level IV, systematic review of Level II through IV studies.
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Arthroscopy
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Karlson N.W.
        • Nezwek T.A.
        • Menendez M.E.
        • Tybor D.
        • Salzler M.J.
        Increased utilization of American administrative databases and large-scale clinical registries in orthopaedic research, 1996 to 2016.
        J Am Acad Orthop Surg Glob Res Rev. 2018; 2: e076
        • Slobogean G.P.
        • Giannoudis P.V.
        • Frihagen F.
        • Forte M.L.
        • Morshed S.
        • Bhandari M.
        Bigger data, bigger problems.
        J Orthop Trauma. 2015; 29: S43
        • Pugely A.J.
        • Martin C.T.
        • Harwood J.
        • Ong K.L.
        • Bozic K.J.
        • Callaghan J.J.
        Database and registry research in orthopaedic surgery: Part 2: Clinical registry data.
        J Bone Joint Surg Am. 2015; 97: 1799-1808
        • Wilson I.
        • Bohm E.
        • Lübbeke A.
        • et al.
        Orthopaedic registries with patient-reported outcome measures.
        EFORT Open Rev. 2019; 4: 357-367
        • Liu J.B.
        • Pusic A.L.
        • Matroniano A.
        • et al.
        First report of a multiphase pilot to measure patient-reported outcomes in the American College of Surgeons National Surgical Quality Improvement Program.
        Jt Comm J Qual Patient Saf. 2019; 45: 319-328
        • Griffin D.R.
        • Parsons N.
        • Mohtadi N.G.H.
        • Safran M.R.
        Multicenter Arthroscopy of the Hip Outcomes Research Network. A short version of the International Hip Outcome Tool (iHOT-12) for use in routine clinical practice.
        Arthroscopy. 2012; 28 (quiz 616-618): 611-616
        • Roos E.M.
        • Roos H.P.
        • Lohmander L.S.
        • Ekdahl C.
        • Beynnon B.D.
        Knee Injury and Osteoarthritis Outcome Score (KOOS)—Development of a self-administered outcome measure.
        J Orthop Sports Phys Ther. 1998; 28: 88-96
        • Johnson T.P.
        • Wislar J.S.
        Response rates and nonresponse errors in surveys.
        JAMA. 2012; 307: 1805-1806
        • Zelle B.
        • Bhandari M.
        • Sanchez A.
        • Probst C.
        • Pape H.-C.
        Loss of follow-up in orthopaedic trauma: Is 80% follow-up still acceptable?.
        J Orthop Trauma. 2013; 27: 177-181
        • Imam M.A.
        • Barke S.
        • Stafford G.H.
        • Parkin D.
        • Field R.E.
        Loss to follow-up after total hip replacement: A source of bias in patient reported outcome measures and registry datasets?.
        Hip Int. 2014; 24: 465-472
        • Kim J.
        • Lonner J.
        • Nelson C.
        • Lotke P.
        Response bias: Effect on outcomes evaluation by mail surveys after total knee arthroplasty.
        J Bone Joint Surg Am. 2004; 86A: 15-21
        • Patel J.
        • Lee J.H.
        • Li Z.
        • SooHoo N.F.
        • Bozic K.
        • Huddleston J.I.
        Predictors of low patient-reported outcomes response rates in the California Joint Replacement Registry.
        J Arthroplasty. 2015; 30: 2071-2075
        • Polk A.
        • Rasmussen J.V.
        • Brorson S.
        • Olsen B.S.
        Reliability of patient-reported functional outcome in a joint replacement registry.
        Acta Orthop. 2013; 84: 12-17
        • Rolfson O.
        • Bohm E.
        • Franklin P.
        • et al.
        Patient-reported outcome measures in arthroplasty registries.
        Acta Orthop. 2016; 87: 9-23
        • Tariq M.B.
        • Vega J.F.
        • Westermann R.
        • Jones M.
        • Spindler K.P.
        Arthroplasty studies with greater than 1000 participants: Analysis of follow-up methods.
        Arthroplasty Today. 2019; 5: 243-250
        • Liberati A.
        • Altman D.G.
        • Tetzlaff J.
        • et al.
        The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: Explanation and elaboration.
        BMJ. 2009; 339: b2700
        • Lind M.
        • Jacobsen K.
        • Nielsen T.
        Medial collateral ligament (MCL) reconstruction results in improved medial stability: Results from the Danish Knee Ligament Reconstruction Registry (DKRR) [published online May 23, 2019]. Knee Surg Sports Traumatol Arthrosc.
        • Eysturoy N.H.
        • Nielsen T.G.
        • Lind M.C.
        Anteromedial portal drilling yielded better survivorship of anterior cruciate ligament reconstructions when comparing recent versus early surgeries with this technique.
        Arthroscopy. 2019; 35: 182-189
        • Nissen K.A.
        • Eysturoy N.H.
        • Nielsen T.G.
        • Lind M.
        Allograft use results in higher re-revision rate for revision anterior cruciate ligament reconstruction.
        Orthop J Sports Med. 2018; 6 (2325967118775381)
        • Faunø P.
        • Rahr-Wagner L.
        • Lind M.
        Risk for revision after anterior cruciate ligament reconstruction is higher among adolescents: Results from the Danish Registry of Knee Ligament Reconstruction.
        Orthop J Sports Med. 2014; 2 (2325967114552405)
        • Lind M.
        • Nielsen T.G.
        • Behrndtz K.
        Both isolated and multi-ligament posterior cruciate ligament reconstruction results in improved subjective outcome: Results from the Danish Knee Ligament Reconstruction Registry.
        Knee Surg Sports Traumatol Arthrosc. 2018; 26: 1190-1196
        • Rahr-Wagner L.
        • Thillemann T.M.
        • Lind M.C.
        • Pedersen A.B.
        Validation of 14,500 operated knees registered in the Danish Knee Ligament Reconstruction Register: Registration completeness and validity of key variables.
        Clin Epidemiol. 2013; 5: 219-228
        • Rahr-Wagner L.
        • Thillemann T.M.
        • Pedersen A.B.
        • Lind M.
        Comparison of hamstring tendon and patellar tendon grafts in anterior cruciate ligament reconstruction in a nationwide population-based cohort study: Results from the Danish Registry of Knee Ligament Reconstruction.
        Am J Sports Med. 2014; 42: 278-284
        • Björnsson H.
        • Andernord D.
        • Desai N.
        • et al.
        No difference in revision rates between single- and double-bundle anterior cruciate ligament reconstruction: A comparative study of 16,791 patients from the Swedish National Knee Ligament Register.
        Arthroscopy. 2015; 31: 659-664
        • Kvist J.
        • Kartus J.
        • Karlsson J.
        • Forssblad M.
        Results from the Swedish National Anterior Cruciate Ligament Register.
        Arthroscopy. 2014; 30: 803-810
        • Desai N.
        • Björnsson H.
        • Samuelsson K.
        • Karlsson J.
        • Forssblad M.
        Outcomes after ACL reconstruction with focus on older patients: Results from the Swedish National Anterior Cruciate Ligament Register.
        Knee Surg Sports Traumatol Arthrosc. 2014; 22: 379-386
        • Ageberg E.
        • Forssblad M.
        • Herbertsson P.
        • Roos E.M.
        Sex differences in patient-reported outcomes after anterior cruciate ligament reconstruction: Data from the Swedish Knee Ligament Register.
        Am J Sports Med. 2010; 38: 1334-1342
        • Rahr-Wagner L.
        • Thillemann T.M.
        • Pedersen A.B.
        • Lind M.C.
        Increased risk of revision after anteromedial compared with transtibial drilling of the femoral tunnel during primary anterior cruciate ligament reconstruction: Results from the Danish Knee Ligament Reconstruction Register.
        Arthroscopy. 2013; 29: 98-105
        • Lind M.
        • Menhert F.
        • Pedersen A.B.
        Incidence and outcome after revision anterior cruciate ligament reconstruction: Results from the Danish Registry for Knee Ligament Reconstructions.
        Am J Sports Med. 2012; 40: 1551-1557
        • Lind M.
        • Menhert F.
        • Pedersen A.B.
        The first results from the Danish ACL reconstruction registry: Epidemiologic and 2 year follow-up results from 5,818 knee ligament reconstructions.
        Knee Surg Sports Traumatol Arthrosc. 2009; 17: 117-124
        • Samuelsson K.
        • Magnussen R.A.
        • Alentorn-Geli E.
        • et al.
        Equivalent Knee Injury and Osteoarthritis Outcome Scores 12 and 24 months after anterior cruciate ligament reconstruction: Results from the Swedish National Knee Ligament Register.
        Am J Sports Med. 2017; 45: 2085-2091
        • Rahardja R.
        • Zhu M.
        • Love H.
        • Clatworthy M.G.
        • Monk A.P.
        • Young S.W.
        Effect of graft choice on revision and contralateral anterior cruciate ligament reconstruction: Results from the New Zealand ACL Registry.
        Am J Sports Med. 2020; 48: 63-69
        • Svantesson E.
        • Hamrin Senorski E.
        • Östergaard M.
        • et al.
        Graft choice for anterior cruciate ligament reconstruction with a concomitant non-surgically treated medial collateral ligament injury does not influence the risk of revision [published online September 13, 2019]. Arthroscopy.
        • Sandon A.
        • Engström B.
        • Forssblad M.
        High risk of further anterior cruciate ligament injury in a 10-year follow-up study of anterior cruciate ligament–reconstructed soccer players in the Swedish National Knee Ligament Registry [published online August 19, 2019]. Arthroscopy.
        • Hamrin Senorski E.
        • Sundemo D.
        • Murawski C.D.
        • et al.
        No differences in subjective knee function between surgical techniques of anterior cruciate ligament reconstruction at 2-year follow-up: A cohort study from the Swedish National Knee Ligament Register.
        Knee Surg Sports Traumatol Arthrosc. 2017; 25: 3945-3954
        • Ahldén M.
        • Samuelsson K.
        • Sernert N.
        • Forssblad M.
        • Karlsson J.
        • Kartus J.
        The Swedish National Anterior Cruciate Ligament Register: A report on baseline variables and outcomes of surgery for almost 18,000 patients.
        Am J Sports Med. 2012; 40: 2230-2235
        • Ingelsrud L.H.
        • Granan L.-P.
        • Terwee C.B.
        • Engebretsen L.
        • Roos E.M.
        Proportion of patients reporting acceptable symptoms or treatment failure and their associated KOOS values at 6 to 24 months after anterior cruciate ligament reconstruction: A study from the Norwegian Knee Ligament Registry.
        Am J Sports Med. 2015; 43: 1902-1907
        • Ingelsrud L.H.
        • Granan L.-P.
        • Engebretsen L.
        • Terwee C.B.
        • Roos E.M.
        Outcomes following primary anterior cruciate ligament reconstruction: Rates of patient acceptable symptom state, treatment failure, and associated KOOS scores in the Norwegian National Knee Ligament Registry.
        Osteoarthritis Cartilage. 2014; 22: S182-S183
        • Lund B.
        • Mygind-Klavsen B.
        • Grønbech Nielsen T.
        • et al.
        Danish Hip Arthroscopy Registry (DHAR): The outcome of patients with femoroacetabular impingement (FAI).
        J Hip Preserv Surg. 2017; 4: 170-177
        • Lund B.
        • Nielsen T.G.
        • Lind M.
        Cartilage status in FAI patients—Results from the Danish Hip Arthroscopy Registry (DHAR).
        SICOT J. 2017; 3: 44
        • Mygind-Klavsen B.
        • Lund B.
        • Nielsen T.G.
        • et al.
        Danish Hip Arthroscopy Registry: Predictors of outcome in patients with femoroacetabular impingement (FAI).
        Knee Surg Sports Traumatol Arthrosc. 2019; 27: 3110-3120
        • Svantesson E.
        • Hamrin Senorski E.
        • Alentorn-Geli E.
        • et al.
        Increased risk of ACL revision with non-surgical treatment of a concomitant medial collateral ligament injury: A study on 19,457 patients from the Swedish National Knee Ligament Registry.
        Knee Surg Sports Traumatol Arthrosc. 2019; 27: 2450-2459
        • Barenius B.
        • Forssblad M.
        • Engström B.
        • Eriksson K.
        Functional recovery after anterior cruciate ligament reconstruction, a study of health-related quality of life based on the Swedish National Knee Ligament Register.
        Knee Surg Sports Traumatol Arthrosc. 2013; 21: 914-927
        • Phillips M.
        • Rönnblad E.
        • Lopez-Rengstig L.
        • et al.
        Meniscus repair with simultaneous ACL reconstruction demonstrated similar clinical outcomes as isolated ACL repair: A result not seen with meniscus resection.
        Knee Surg Sports Traumatol Arthrosc. 2018; 26: 2270-2277
        • Hamrin Senorski E.
        • Alentorn-Geli E.
        • Musahl V.
        • et al.
        Increased odds of patient-reported success at 2 years after anterior cruciate ligament reconstruction in patients without cartilage lesions: A cohort study from the Swedish National Knee Ligament Register.
        Knee Surg Sports Traumatol Arthrosc. 2018; 26: 1086-1095
        • Røtterud J.H.
        • Sivertsen E.A.
        • Forssblad M.
        • Engebretsen L.
        • Årøen A.
        Effect of meniscal and focal cartilage lesions on patient-reported outcome after anterior cruciate ligament reconstruction: A nationwide cohort study from Norway and Sweden of 8476 patients with 2-year follow-up.
        Am J Sports Med. 2013; 41: 535-543
        • Soreide E.
        • Granan L.P.
        • Hjorthaug G.A.
        • Espehaug B.
        • Dimmen S.
        • Nordsletten L.
        The effect of limited perioperative nonsteroidal anti-inflammatory drugs on patients undergoing anterior cruciate ligament reconstruction.
        Am J Sports Med. 2016; 44: 3111-3118
        • LaPrade C.M.
        • Dornan G.J.
        • Granan L.-P.
        • LaPrade R.F.
        • Engebretsen L.
        Outcomes after anterior cruciate ligament reconstruction using the Norwegian Knee Ligament Registry of 4691 patients: How does meniscal repair or resection affect short-term outcomes?.
        Am J Sports Med. 2015; 43: 1591-1597
        • Granan L.-P.
        • Baste V.
        • Engebretsen L.
        • Inacio M.C.S.
        Associations between inadequate knee function detected by KOOS and prospective graft failure in an anterior cruciate ligament-reconstructed knee.
        Knee Surg Sports Traumatol Arthrosc. 2015; 23: 1135-1140
        • Balasingam S.
        • Sernert N.
        • Magnusson H.
        • Kartus J.
        Patients with concomitant intra-articular lesions at index surgery deteriorate in their Knee Injury and Osteoarthritis Outcome Score in the long term more than patients with isolated anterior cruciate ligament rupture: A study from the Swedish National Anterior Cruciate Ligament Register.
        Arthroscopy. 2018; 34: 1520-1529
        • Ulstein S.
        • Årøen A.
        • Engebretsen L.
        • Forssblad M.
        • Lygre S.H.L.
        • Røtterud J.H.
        Effect of concomitant cartilage lesions on patient-reported outcomes after anterior cruciate ligament reconstruction: A nationwide cohort study from Norway and Sweden of 8470 patients with 5-year follow-up.
        Orthop J Sports Med. 2018; 6 (2325967118786219)
        • Hamrin Senorski E.
        • Svantesson E.
        • Spindler K.P.
        • et al.
        Ten-year risk factors for inferior Knee Injury and Osteoarthritis Outcome Score after anterior cruciate ligament reconstruction: A study of 874 patients from the Swedish National Knee Ligament Register.
        Am J Sports Med. 2018; 46: 2851-2858
        • Reinholdsson J.
        • Kraus-Schmitz J.
        • Forssblad M.
        • Edman G.
        • Byttner M.
        • Stålman A.
        A non-response analysis of 2-year data in the Swedish Knee Ligament Register.
        Knee Surg Sports Traumatol Arthrosc. 2017; 25: 2481-2487
        • Non-arthroplasty Hip Registry
        Annual reports.
        http://www.nahr.co.uk/annual-reports/
        Date accessed: October 24, 2019
        • Bjerre J.J.
        • Jensen P.K.
        • Sparsø B.H.
        • Krogsgaard M.R.
        Potential serious bias in National Clinical Databases with low degree of reported follow-up.
        Scand J Med Sci Sports. 2017; 27: 999-1004
        • Basques B.A.
        • McLynn R.P.
        • Lukasiewicz A.M.
        • Samuel A.M.
        • Bohl D.D.
        • Grauer J.N.
        Missing data may lead to changes in hip fracture database studies: A study of the American College of Surgeons National Surgical Quality Improvement Program.
        Bone Joint J. 2018; 100-B: 226-232
        • Basques B.A.
        • McLynn R.P.
        • Fice M.P.
        • et al.
        Results of database studies in spine surgery can be influenced by missing data.
        Clin Orthop Relat Res. 2017; 475: 2893-2904
        • Pronk Y.
        • Pilot P.
        • Brinkman J.M.
        • van Heerwaarden R.J.
        • van der Weegen W.
        Response rate and costs for automated patient-reported outcomes collection alone compared to combined automated and manual collection.
        J Patient Rep Outcomes. 2019; 3: 31
        • Sackett D.L.
        • Richardson W.S.
        • Rosenberg W.
        • Haynes B.
        Evidence-based medicine: How to practice and teach EBM.
        Churchill Livingstone, New York1997 (Accessed January 3, 2020)
        • Clinical Orthopaedics and Related Research
        Author/reviewer tools.
        • The Journal of Bone and Joint Surgery
        JBJS, Inc. journals level of evidence.
        • Arthroscopy
        Arthroscopy journal systematic review/meta-analysis template.
        • JAMA Network
        Instructions for authors.
        (Accessed January 3, 2020)
        • Bell M.L.
        • Fairclough D.L.
        Practical and statistical issues in missing data for longitudinal patient-reported outcomes.
        Stat Methods Med Res. 2014; 23: 440-459
        • Neuhaus V.
        • Ring D.
        Effect of different statistical methods on union or time to union in a published study about clavicular fractures.
        J Shoulder Elbow Surg. 2013; 22: 471-477
        • EQUATOR Network
        Library.
        https://www.equator-network.org/library/
        Date accessed: June 3, 2020
      1. Balk EM, Chung M, Chen ML, Trikalinos TA, Chang LKW. Assessing the accuracy of Google Translate to allow data extraction from trials published in non-English languages. Rockville, MD: Agency for Healthcare Research and Quality (US), 2013. https://www.ncbi.nlm.nih.gov/books/NBK121306/. Accessed January 24, 2020.

        • Mueller-Rath R.
        • Miltner O.
        • Hochrein A.
        • Niemeyer P.
        The German Arthroscopy Registry (DART).
        Knee Surg Sports Traumatol Arthrosc. 2017; 25: 3657-3660
        • Maurer J.
        • Grotejohann B.
        • Jenkner C.
        • et al.
        A registry for evaluation of efficiency and safety of surgical treatment of cartilage defects: The German Cartilage Registry (KnorpelRegister DGOU).
        JMIR Res Protoc. 2016; 5: e122