Retrospective assessment of the availability of routine data related to the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised in the electronic medical records of a university hospital

Abstract

Background: Nurses routinely access and use electronic medical record (EMR) systems. Suitable multidisciplinary care should be provided to each patient with amyotrophic lateral sclerosis (ALS). The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) has been used for patient assessments in clinical trials or healthcare evaluations. Aim: Here, we aimed to retrospectively determine how efficiently ALSFRS-R-related data of clinically confirmed ALS patients were routinely recorded, especially by nurses, and how easily the data could be retrieved. Methods: A quantitative and descriptive method was adopted for analyzing EMR admission records from April 2011 to March 2017. All the EMRs from the period were searched to retrieve ALSFRS-R-related data and relevant records. In cases that were difficult to categorize, the most appropriate level among neighboring levels was operatively assigned. We also attempted to assess how easily data could be retrieved based on the number of screen transitions. Results: In total, 105 admission datasets (71 patients) were eligible. Fifty admissions with explicit ALSFRS-R-related data, 21 with translatable records, and 32 with ALSFRS-R items in documents maintained for the government were retrieved. Two admission datasets contained no ALSFRS-R-related clues. No descriptions were identified as ALSFRS-R items within the nursing records. Physicians recorded data mainly in the shallow levels of EMRs. Nurses recorded translatable data in both shallow and deep levels for 3 items: speech, swallowing, and dyspnea. Conclusion: This study has shown that routine descriptions in the EMR system recorded by nurses were insufficient in terms of the amount, quality, and accessibility of ALSFRS-R-related information.