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

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.

Adverse events in spine surgery in Sweden: a comparison of patient claims data and national quality register (Swespine) data .

BACKGROUND AND PURPOSE: Our knowledge of complications and adverse events in spinal surgery is limited, especially concerning incidence and consequences. We therefore investigated adverse events in spine surgery in Sweden by comparing patient claims data from the County Councils' Mutual Insurance Company register with data from the National Swedish Spine Register (Swespine). METHODS: We analyzed patient claims (n = 182) to the insurance company after spine surgery performed between 2003 and 2005. The medical records of the patients filing these claims were reviewed and compared with Swespine data for the same period. RESULTS: Two-thirds (119/182, 65%) of patients who claimed economic compensation from the insurance company were registered in Swespine. Of the 210 complications associated with these 182 claims, only 74 were listed in Swespine. The most common causes of compensated injuries (n = 139) were dural lesions (n = 40) and wound infections (n = 30). Clinical outcome based on global assessment, leg pain, disability, and quality of health was worse for patients who claimed economic compensation than for the total group of Swespine patients. INTERPRETATION: We found considerable under-reporting of complications in Swespine. Dural lesions and infections were not well recorded, although they were important reasons for problems and contributed to high levels of disability. By analyzing data from more than one source, we obtained a better understanding of the patterns of adverse events and outcomes after spine surgery.