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Defining a core outcome set for adolescent and young adult patients with a spinal deformity.

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.

SUBMITTER: de Kleuver M

PROVIDER: S-EPMC5694805 | biostudies-other | 2017 Dec

REPOSITORIES: biostudies-other

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Defining a core outcome set for adolescent and young adult patients with a spinal deformity.

de Kleuver Marinus M Faraj Sayf S A SSA Holewijn Roderick M RM Germscheid Niccole M NM Adobor Raphael D RD Andersen Mikkel M Tropp Hans H Dahl Benny B Keskinen Heli H Olai Anders A Polly David W DW van Hooff Miranda L ML Haanstra Tsjitske M TM

Acta orthopaedica 20170915 6

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 Deformit ...[more]

PMID: 28914116

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Project description:PurposeSymptomatic adult spinal deformity (ASD) with an extremely variable presentation with pain, with and without neurogenic leg pain, and/or disturbed sagittal and coronal balance, causes a significant societal burden of disease. It is an important consequence of the aging adult population, generating a plethora of spine-related interventions with variable treatment efficacy and consistently high costs. Recent years have witnessed more than a threefold increase in the prevalence and treatment of ASD, and further increases over the coming decades are expected with the growing elderly population worldwide. The ability to monitor and assess clinical outcomes has not kept pace with these developments. This paper addresses the pressing need to provide a set of common outcome metrics for this growing group of patients with back pain and other disabilities due to an adult spinal deformity.MethodsThe standard outcome set was created by a panel with global representation, using a thorough modified Delphi procedure. The three-tiered outcome hierarchy (Porter) was used as a framework to capture full cycle of care. The standardized language of the International Classification of Functioning, Disability and Health (WHO-ICF) was used.ResultsConsensus was reached on a core set of 25 WHO-ICF outcome domains ('What to measure'); on the accompanying globally available clinician and patient reported measurement instruments and definitions ('How to measure'), and on the timing of the measurements ('When to measure'). The current work has brought to light domains not routinely reported in the spinal literature (such as pulmonary function, return to work, social participation), and domains for which no adequate instruments have yet been identified (such as how to clinically quantify in routine practice lumbar spinal stenosis, neurogenic claudication, radicular pain, and loss of lower extremity motor function).ConclusionA standard outcome set was developed for patients undergoing treatment for adult spinal deformity using globally available outcome metrics. The current framework can be considered a reference for further work, and may provide a starting point for routine methodical and systematic monitoring of outcomes. Post-COVID e-health may accelerate the routine capture of these types of data.

Project description:BackgroundAdult spinal deformity patients (ASD) experience altered spinal alignment affecting spatiotemporal parameters and joint kinematics. Differences in spinal deformity between patients with symptomatic idiopathic scoliosis (ID-ASD) and patients with "de novo" scoliosis (DN-ASD) may affect gait characteristics differently. This study aims to compare gait characteristics between ID-ASD, DN-ASD, and asymptomatic healthy matched controls.MethodsIn this observational case-control study, ID-ASD (n = 24) and DN-ASD (n = 26) patients visiting the out-patient spine clinic and scheduled for long-segment spinal fusion were included. Patients were matched, based on age, gender, leg length and BMI, with asymptomatic healthy controls. Gait was measured at comfortable walking speed on an instrumented treadmill with 3D motion capture system. Trunk, pelvic and lower extremities range of motion (ROM) and spatiotemporal parameters (SPT) are presented as median (first and thirds quartile). Independent t-test or Mann-Whitney U test was used to compare ID-ASD, DN-ASD and controls. Statistical Parametric Mapping (independent t-test) was used to compare 3D joint kinematics.ResultsDN-ASD patients walk with increased anterior trunk tilt during the whole gait cycle compared with ID-ASD patients and controls. ID-ASD walk with decreased trunk lateroflexion compared with DN-ASD and controls. DN-ASD showed decreased pelvic obliquity and -rotation, increased knee flexion, and decreased ankle plantar flexion. ID-ASD and DN-ASD displayed decreased trunk, pelvic and lower extremity ROM compared with controls, but increased pelvic tilt ROM. ID-ASD patients walked with comparable SPT to controls, whereas DN-ASD patients walked significantly slower with corresponding changes in SPT and wider steps.ConclusionsDN-ASD patients exhibit distinct alterations in SPT and kinematic gait characteristics compared with ID-ASD and controls. These alterations seem to be predominantly influenced by sagittal spinal malalignment and kinematic findings in ASD patients should not be generalized as such, but always be interpreted with consideration for the nature of the ASD.

Project description:Study designA post hoc analysis.ObjectiveAdvances in machine learning (ML) have led to tools offering individualized outcome predictions for adult spinal deformity (ASD). Our objective is to examine the properties of these ASD models in a cohort of adult symptomatic lumbar scoliosis (ASLS) patients.Summary of background dataML algorithms produce patient-specific probabilities of outcomes, including major complication (MC), reoperation (RO), and readmission (RA) in ASD. External validation of these models is needed.MethodsThirty-nine predictive factors (12 demographic, 9 radiographic, 4 health-related quality of life, 14 surgical) were retrieved and entered into web-based prediction models for MC, unplanned RO, and hospital RA. Calculated probabilities were compared with actual event rates. Discrimination and calibration were analyzed using receiver operative characteristic area under the curve (where 0.5=chance, 1=perfect) and calibration curves (Brier scores, where 0.25=chance, 0=perfect). Ninety-five percent confidence intervals are reported.ResultsA total of 169 of 187 (90%) surgical patients completed 2-year follow up. The observed rate of MCs was 41.4% with model predictions ranging from 13% to 68% (mean: 38.7%). RO was 20.7% with model predictions ranging from 9% to 54% (mean: 30.1%). Hospital RA was 17.2% with model predictions ranging from 13% to 50% (mean: 28.5%). Model classification for all three outcome measures was better than chance for all [area under the curve=MC 0.6 (0.5-0.7), RA 0.6 (0.5-0.7), RO 0.6 (0.5-0.7)]. Calibration was better than chance for all, though best for RA and RO (Brier Score=MC 0.22, RA 0.16, RO 0.17).ConclusionsASD prediction models for MC, RA, and RO performed better than chance in a cohort of adult lumbar scoliosis patients, though the homogeneity of ASLS affected calibration and accuracy. Optimization of models require samples with the breadth of outcomes (0%-100%), supporting the need for continued data collection as personalized prediction models may improve decision-making for the patient and surgeon alike.

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Defining a core outcome set for adolescent and young adult patients with a spinal deformity.

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Defining a core outcome set for adolescent and young adult patients with a spinal deformity.

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