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

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Scoliosis Research Society survey: brace management in adolescent idiopathic scoliosis

Purpose: While the Scoliosis Research Society (SRS) has established criteria for brace initiation in adolescent idiopathic scoliosis (AIS), there are no recommendations concerning other management issues. As the BrAIST study reinforced the utility of bracing, the SRS Non-Operative Management Committee decided to evaluate the consensus or discord in AIS brace management. Methods: 1200 SRS members were sent an online survey in 2017, which included 21 items concerning demographics, bracing indications, management, and monitoring. Free-text responses were analyzed and collated into common themes. Data were analyzed using Microsoft Excel 2013. Results: Of 218 respondents; 207 regularly evaluate and manage patients with AIS, and 205 currently prescribe bracing. 99% of respondents use bracing for AIS and the majority (89%) use the published SRS criteria, or a modified version, to initiate bracing. 85% do not use brace monitoring and 66% use both %-Cobb correction and fit criteria to evaluate brace adequacy. In contrast, other aspects of brace management demonstrated a high degree of practice variability. This was seen with a radiographic assessment of maturity level, hours prescribed, timing and frequency of radiographic evaluation, the use of nighttime bracing only, and the method and timing of brace discontinuation. Conclusion: Although there is consensus in brace management amongst SRS members with respect to brace initiation and evaluation of adequacy, there is striking variability in how bracing for AIS is used. This variability may impact the overall efficacy of brace treatment and may be decreased with more robust guidelines from the SRS. Level of evidence: III.</p

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 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.Funding Agencies|AOSpine through AOSpine knowledge forum deformity</p