The Scoliosis Research Society adult spinal deformity standard outcome set

the COSSCO study group

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

Abstract

Purpose: Symptomatic adult spinal deformity (ASD) with an extremely variable presentation with pain, with and without neurogenic leg pain, and/or disturbed sagittal and coronal balance, causes a significant societal burden of disease. It is an important consequence of the aging adult population, generating a plethora of spine-related interventions with variable treatment efficacy and consistently high costs. Recent years have witnessed more than a threefold increase in the prevalence and treatment of ASD, and further increases over the coming decades are expected with the growing elderly population worldwide. The ability to monitor and assess clinical outcomes has not kept pace with these developments. This paper addresses the pressing need to provide a set of common outcome metrics for this growing group of patients with back pain and other disabilities due to an adult spinal deformity. Methods: The standard outcome set was created by a panel with global representation, using a thorough modified Delphi procedure. The three-tiered outcome hierarchy (Porter) was used as a framework to capture full cycle of care. The standardized language of the International Classification of Functioning, Disability and Health (WHO-ICF) was used. Results: Consensus was reached on a core set of 25 WHO-ICF outcome domains (‘What to measure’); on the accompanying globally available clinician and patient reported measurement instruments and definitions (‘How to measure’), and on the timing of the measurements (‘When to measure’). The current work has brought to light domains not routinely reported in the spinal literature (such as pulmonary function, return to work, social participation), and domains for which no adequate instruments have yet been identified (such as how to clinically quantify in routine practice lumbar spinal stenosis, neurogenic claudication, radicular pain, and loss of lower extremity motor function). Conclusion: A standard outcome set was developed for patients undergoing treatment for adult spinal deformity using globally available outcome metrics. The current framework can be considered a reference for further work, and may provide a starting point for routine methodical and systematic monitoring of outcomes. Post-COVID e-health may accelerate the routine capture of these types of data.

Original languageEnglish (US)
Pages (from-to)1211-1221
Number of pages11
JournalSpine Deformity
Volume9
Issue number5
DOIs
StatePublished - Sep 2021

Bibliographical note

Funding Information:
The authors would like to thank the Scoliosis Research Society for funding and support, and the COSSCO study group. In alphabetical order: Alanay, Ahmet., MD (Department of Orthopedics and Traumatology, Acibadem University, Istanbul, Turkey); Basu, Saumyajit., MS, MD (Park Clinic, Kolkata, West Bengal, India); Bess, Shay., MD (Denver International Spine Center, Presbyterian St. Luke’s/Rocky Mountain Hospital for Children, Denver, CO, USA); Brodke, Darrel., MD (Department of Orthopaedics, University of Utah Orthopaedic Center, USA); Carreon, Leah Y., MD, MSc (Norton Leatherman Spine Center, Louisville, USA); De Kleuver, Marinus., MD, PhD (Department of Orthopedics, Radboud University Medical Center, Nijmegen, The Netherlands); Defino, Helton L.A., MD, PhD (Pediatric Neurosurgery Center/CENEPE – Beneficência Portuguesa Hospital, São Paulo, Brazil); Faraj, Sayf S.A., MD (Department of Orthopedics, Radboud University Medical Center, Nijmegen, The Netherlands); Glassman, Steven D., MD (Norton Leatherman Spine Center and Department of Orthopedic Surgery, University of Louisville, Louisville, United States); Gehrchen, Martin., MD, PhD (Department of Orthopedic Surgery, University Hospital of Copenhagen, Copenhagen, Denmark); Gupta, Munish C., MD (Department of Orthopaedics, Washington University in St. Louis, St. Louis, USA); Haanstra, Tsjitske M., PhD (Department of Orthopedics, Radboud University Medical Center, Nijmegen, The Netherlands); Hai, Yong., MD (Department of Orthopedic Surgery, Beijing Chao-Yang Hospital, Capital Medical University, Beijing, China); Halm, Henry F.M., MD, PhD (Department of Spine Surgery with Scoliosis Center, Schoen Klinik Neustadt, Neustadt, Germany); Harding, Ian., MD (Department of Spinal Surgery, Southmead Hospital, Bristol, United Kingdom); Lafage, Virginie., PhD (Department of Orthopaedic Surgery, Hospital for Special Surgery, New York, USA); Liu, Gabriel., MD (Department of Orthopaedic Surgery, National University Hospital, Singapore); Matsumoto, Morio., MD (Department of Orthopaedic Surgery, Keio University School of Medicine, Tokyo, Japan); Obeid, Ibrahim., MD (Spine Surgery Unit, Bordeaux University Hospital, Bordeaux, France); Parent, Stefan., MD, PhD (Division of Orthopaedic Surgery, CHU Sainte-Justine, Montreal, Canada); Pellisé, Ferran., MD (Spine Surgery Unit, Hospital Vall d’Hebron, Barcelona, Spain); Place, Howard M., MD (Department of Orthopaedic Surgery, Saint Louis University School of Medicine, Saint Louis, USA); Polly, David W., MD (Department of Orthopaedic Surgery, University of Minnesota, Minneapolis, USA); Rothenfluh, Dominique A., MD, PhD (Division of Spinal Surgery, Oxford University Hospitals NHS Foundation Trust, Oxford, United Kingdom); Sethi, Rajiv., MD (Neuroscience Institute, Virginia Mason Medical Center, Seattle, USA); Spruit, Maarten., MD, PhD. (Department of Orthopedic Surgery, Sint Maartenskliniek, Nijmegen, The Netherlands); Stephen Lewis J., MD (UHN-Orthopedics, Toronto Western Hospital, Toronto, Ontario, Canada); Uribe, Juan S., MD (Barrow Neurological Institute, Phoenix, AR, USA); Van Hooff, Miranda L., PhD (Department of Orthopedics, Radboud University Medical Center, Nijmegen, The Netherlands); Wright, Anna K., PhD (Neuroscience Institute, Virginia Mason Medical Center, Seattle, USA); Yagi, Mitsuru., MD (Department of Orthopaedic Surgery, Keio University School of Medicine, Tokyo, Japan); Zhu, Zezhang MD (Department of Spine Surgery, Drum Tower Hospital of Nanjing University Medical School, Nanjing, China).

Publisher Copyright:
© 2021, The Author(s).

Keywords

  • Adult spinal deformity
  • Core outcome set
  • Delphi technique
  • Outcomes assessment
  • Patient-reported outcomes
  • Spine

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