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Defining a core outcome set for adolescent and young adult patients with a spinal deformity A collaborative effort for the Nordic Spine Surgery Registries
Radboud University of Nijmegen, Netherlands.
Vrije University of Amsterdam, Netherlands.
Vrije University of Amsterdam, Netherlands.
AOSpine Int, Switzerland.
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2017 (English)In: Acta Orthopaedica, ISSN 1745-3674, E-ISSN 1745-3682, Vol. 88, no 6, p. 612-618Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
TAYLOR & FRANCIS LTD , 2017. Vol. 88, no 6, p. 612-618
National Category
Orthopaedics
Identifiers
URN: urn:nbn:se:liu:diva-143747DOI: 10.1080/17453674.2017.1371371ISI: 000416605900010PubMedID: 28914116OAI: oai:DiVA.org:liu-143747DiVA, id: diva2:1166682
Note

Funding Agencies|AOSpine through AOSpine knowledge forum deformity

Available from: 2017-12-15 Created: 2017-12-15 Last updated: 2018-05-03

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Division of Surgery, Orthopedics and OncologyFaculty of Medicine and Health SciencesDepartment of Spinal Surgery
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