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

Marinus de Kleuver*, Sayf S.A. Faraj, Roderick M. Holewijn, Niccole M. Germscheid, Raphael D. Adobor, Mikkel Andersen, Hans Tropp, Benny Dahl, Heli Keskinen, Anders Olai, David W. Polly, Miranda L. van Hooff, Tsjitske M. Haanstra

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

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”, “self-image”, “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.

Original languageEnglish
Pages (from-to)612-618
Number of pages7
JournalActa Orthopaedica
Volume88
Issue number6
DOIs
Publication statusPublished - 2 Nov 2017

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