TY - JOUR
T1 - Defining a core outcome set for adolescent and young adult patients with a spinal deformity
T2 - A collaborative effort for the Nordic Spine Surgery Registries
AU - de Kleuver, Marinus
AU - Faraj, Sayf S.A.
AU - Holewijn, Roderick M.
AU - Germscheid, Niccole M.
AU - Adobor, Raphael D.
AU - Andersen, Mikkel
AU - Tropp, Hans
AU - Dahl, Benny
AU - Keskinen, Heli
AU - Olai, Anders
AU - Polly, David W.
AU - van Hooff, Miranda L.
AU - Haanstra, Tsjitske M.
N1 - Funding Information:
We thank the AOSpine Knowledge Forum Deformity for funding this study. AOSpine is a clinical division of the AO Foundation—an independent medically guided nonprofit organization.
Publisher Copyright:
© 2017 The Author(s). Published by Taylor & Francis on behalf of the Nordic Orthopedic Federation.
PY - 2017/11/2
Y1 - 2017/11/2
N2 - 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.
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”, “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.
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U2 - 10.1080/17453674.2017.1371371
DO - 10.1080/17453674.2017.1371371
M3 - Article
C2 - 28914116
AN - SCOPUS:85029474972
SN - 1745-3674
VL - 88
SP - 612
EP - 618
JO - Acta orthopaedica
JF - Acta orthopaedica
IS - 6
ER -