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...
| Published in: | Acta Orthopaedica Vol. 88; no. 6; pp. 612 - 619 |
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| Main Authors: | , , , , , , , , , , , , |
| Format: | research systematic review tables/charts Journal Article |
| Published: |
Medical Journals Sweden AB
Dec2017
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| Online Access: | View this record in EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=126129125&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 126129125 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 17453674 1BVL jtl: Acta Orthopaedica issn: 17453674 maglogo: N pubinfo: dt: Dec2017 vid: 88 iid: 6 pid: 59195 pub: Medical Journals Sweden AB artinfo: ui: 126129125 126129125 126129125 10.1080/17453674.2017.1371371 126129125 ppf: 612 ppct: 7 formats: fmt: – @attributes: type: T – @attributes: type: P tig: 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 refInfo: holdings: @attributes: islocal: N |
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