Defining a core outcome set for adolescent and young adult patients with a spinal deformity: A collaborative effort for the Nordic Spine Surgery Registries.

Background and purpose -- Routine outcome measurement has been shown to improve performance in several fields of healthcare. National spine surgery registries have been initiated in 5 Nordic countries. However, there is no agreement on which outcomes are essential to measure for adolescent and young...

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Published in:Acta Orthopaedica Vol. 88; no. 6; pp. 612 - 619
Main Authors: de Kleuver, Marinus, Faraj, Sayf S A, Holewijn, Roderick M, Germscheid, Niccole M, Adobor, Raphael D, Andersen, Mikkel, Tropp, Hans, Dahl, Benny, Keskinen, Heli, Olai, Anders, Polly, David W, van Hooff, Miranda L, Haanstra, Tsjitske M
Format: research systematic review tables/charts Journal Article
Published: Medical Journals Sweden AB Dec2017
Online Access:View this record in EBSCOhost
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      dt: Dec2017
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      pub: Medical Journals Sweden AB
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        10.1080/17453674.2017.1371371
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        atl: Defining a core outcome set for adolescent and young adult patients with a spinal deformity: A collaborative effort for the Nordic Spine Surgery Registries.
      aug:
        au:
          de Kleuver, Marinus
          Faraj, Sayf S A
          Holewijn, Roderick M
          Germscheid, Niccole M
          Adobor, Raphael D
          Andersen, Mikkel
          Tropp, Hans
          Dahl, Benny
          Keskinen, Heli
          Olai, Anders
          Polly, David W
          van Hooff, Miranda L
          Haanstra, Tsjitske M
        affil: Department of Orthopedic Surgery, Radboud University Medical Center, Nijmegen, the Netherlands
      sug:
        subj:
          Outcome Assessment Standards
          Spinal Diseases Pathology
          Spinal Diseases Pathology
          Human
          Adolescence
          Young Adult
          Europe
          Registries, Disease
          Systematic Review
          Delphi Technique
          Qualitative Studies
          Quantitative Studies
          Consensus
          Patient Satisfaction
          Quality of Life
          Recreation
          Leisure Activities
          Self Concept
          Questionnaires
          Collaboration
          Adolescent: 13-18 years
      ab: Background and purpose -- Routine outcome measurement has been shown to improve performance in several fields of healthcare. National spine surgery registries have been initiated in 5 Nordic countries. However, there is no agreement on which outcomes are essential to measure for adolescent and young adult patients with a spinal deformity. The aim of this study was to develop a core outcome set (COS) that will facilitate benchmarking within and between the 5 countries of the Nordic Spinal Deformity Society (NSDS) and other registries worldwide. Material and methods -- From August 2015 to September 2016, 7 representatives (panelists) of the national spinal surgery registries from each of the NSDS countries participated in a modified Delphi study. With a systematic literature review as a basis and the International Classification of Functioning, Disability and Health framework as guidance, 4 consensus rounds were held. Consensus was defined as agreement between at least 5 of the 7 representatives. Data were analyzed qualitatively and quantitatively. Results -- Consensus was reached on the inclusion of 13 core outcome domains: "satisfaction with overall outcome of surgery", "satisfaction with cosmetic result of surgery", "pain interference", physical functioning", "health-related quality of life", "recreation and leisure", "pulmonary fatigue", "change in deformity", "selfimage", "pain intensity", "physical function", "complications", and "re-operation". Panelists agreed that the SRS-22r, EQ-5D, and a pulmonary fatigue questionnaire (yet to be developed) are the most appropriate set of patient-reported measurement instruments that cover these outcome domains. Interpretation -- We have identified a COS for a large subgroup of spinal deformity patients for implementation and validation in the NSDS countries. This is the first study to further develop a COS in a global perspective.
      pubtype: Academic Journal
      doctype:
        research
        systematic review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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