Developing the Epworth HealthCare neuromodulation registry.

Abstract

INTRODUCTION: Chronic pain is a primary cause of patient-reported disability. Medical management focuses on analgesia, with non-responders often progressing to surgery. However, it was previously reported that 5-50% of chronic pain patients remained symptomatic following spinal surgery. Innovative management strategies such as Spinal Cord Stimulation (SCS) have thus become a focus for pain clinicians. SCS delivers electrical pulses to spinal nerves, modulating transmission of pain signals to the brain. However, SCS is not without complications and a poor response to stimulation, or long-term stimulation failure remain ongoing concerns. To allow improved prediction of trial stimulation outcomes, complication monitoring and the optimizing of long-term stimulation strategies, improved data collection and reporting is required. Clinical registries provide cost-effective means of gaining insights into best practice, therefore this study aims to develop an Epworth HealthCare-wide registry for collecting data on patients undergoing SCS procedures for chronic pain. METHODS: The Delphi technique was utilized to achieve consensus among expert clinicians on the minimum dataset to be captured that best reflected current clinical practice. This dataset was transferred to forms for both clinicians and participants to complete. Online forms and a database were developed via the web-based software 'WebQi'. RESULTS: The minimum dataset included standardized pain, function and quality-of-life measures to be collected pre- and post-procedurally. Broad agreement was reached among a group of ten clinicians, and the forms have been distributed. The registry is undergoing final modifications and revisions prior to final implementation. CONCLUSIONS: This study is the first of its kind in Australia. It has the potential to set a benchmark for system-wide approaches to data collection in SCS surgery and will facilitate reporting to the wider literature. It will promote interdisciplinary collaboration and has the potential to unify clinicians in continuous care improvement in a rapidly evolving, technology-driven setting.