Evidence and practice in spine registries

Abstract

Background and purpose — We performed a systematic review and a survey in order to (1) evaluate the evidence for the impact of spine registries on the quality of spine care, and with that, on patient-related outcomes, and (2) evaluate the methodology used to organize, analyze, and report the “quality of spine care” from spine registries.

Methods — To study the impact, the literature on all spinal disorders was searched. To study methodology, the search was restricted to degenerative spinal disorders. The risk of bias in the studies included was assessed with the Newcastle-Ottawa scale. Additionally, a survey among registry representatives was performed to acquire information about the methodology and practice of existing registries.

Results — 4,273 unique references up to May 2014 were identified, and 1,210 were eligible for screening and assessment. No studies on impact were identified, but 34 studies were identified to study the methodology. Half of these studies (17 of the 34) were judged to have a high risk of bias. The survey identified 25 spine registries, representing 14 countries. The organization of these registries, methods used, analytical approaches, and dissemination of results are presented.

Interpretation — We found a lack of evidence that registries have had an impact on the quality of spine care, regardless of whether intervention was non-surgical and/or surgical. To improve the quality of evidence published with registry data, we present several recommendations. Application of these recommendations could lead to registries showing trends, monitoring the quality of spine care given, and ultimately improving the value of the care given to patients with degenerative spinal disorders.

MH, WJ, and PF had the idea for the study. All authors contributed to the design of the study. RO provided methodological input, and MK and PF provided clinical input during the protocol phase. MH and WJ designed the search strategy for the literature search and developed the survey. They performed the study selection, appraised the quality of the literature, and performed the data extraction. They also analyzed the data both for the systematic review and for the survey. All the authors contributed to interpretation of the results. MH, WJ, and PF drafted the manuscript. MH and WJ wrote the appendices. All the authors critically revised the manuscript and read and approved the final version.

We thank the members of the ICHOM Low Back Pain Working Group and all the participants who completed the spine registry survey. We especially thank Caleb Stowell (ICHOM) for his support in building and managing the survey in the Harvard Business Qualitrics online web-application and Serge Stommels for his support in translating Russian texts in relation to the Russian Spine Registry.

No competing interests declared.