The Epworth healthcare neuromodulation registry: asessing data collection compliance.

Abstract

INTRODUCTION: The Epworth Neuromodulation Registry (ENR) commenced in July 2017. The value of clinical registries is limited by its quality of data; itself largely dependent on the adherence of clinicians and patients to the data collection process. This study aims to investigate data collection compliance or ‘form completion compliance’ (FCC) for the ENR, informing future approaches to optimise registry performance.

METHODS: Surgeon-reported clinical data and patient-reported outcome data were collected using 4 paper forms during an episode of care. Surgeons completed form 1 before, form 2 during, and form 3 after surgery, while patients completed form 4 twice: before and after surgery. FCC was assessed over eight months from five contributing clinicians, with each time-point during an episode of care marked as either ‘completed’ or ‘not completed’. Based on previous literature, FCC (%) was calculated for each form as the number of completed forms divided by the number of patients that underwent an episode of care.

RESULTS: Of the 32 patients entered, FCC for forms 1-3 were 90.63%, 93.75% and 75% respectively, whilst FCC for form 4 was 43.75% before surgery and 81.25% after surgery. 37.5% of patients completed form 4 both before and after surgery, while 31.25% of patients had complete datasets for the entire episode of care.

CONCLUSIONS: With previous clinical registries reporting benchmark FCC of 98%, our findings indicate that our data collection process may require improvement. Future investigations will aim to identify factors contributing to reduced FCC, ensuring the clinical value of the ENR is maximised into the future.