ABSTRACT
Rare neuromuscular diseases (NMDs) encompass various disorders of the nervous system and skeletal muscles, and present intricate challenges in diagnosis, treatment, and research due to their low prevalence and often diverse multisystemic manifestations. Leveraging collected patient data for secondary use and analysis holds promise for advancing medical understanding in this field. However, a certain level of data quality is a prerequisite for the methods that can be used to analyze data. The heterogeneous nature of NMDs poses a significant obstacle to the creation of standardized documentation, as there are still many challenges to accurate diagnosis and many discrepancies in the diagnostic process between different countries. This paper proposes the development of an information model tailored to NMDs, aiming to augment visibility, address deficiencies in documentation, and facilitate comprehensive analysis and research endeavors. By providing a structured framework, this model seeks to propel advancements in understanding and managing NMD, ultimately benefiting patients and healthcare providers worldwide.
Subject(s)
Documentation , Neuromuscular Diseases , Rare Diseases , Neuromuscular Diseases/diagnosis , Humans , Rare Diseases/diagnosis , Rare Diseases/therapy , Documentation/standards , Electronic Health RecordsABSTRACT
BACKGROUND: Case numbers in central emergency departments (EDs) have risen during the past decade in Germany, leading to recurrent overcrowding, increased risks in emergency care, and elevated costs. Particularly the fraction of outpatient emergency treatments has increased disproportionately. Within the framework of the Optimization of emergency care by structured triage with intelligent assistant service (OPTINOFA, Förderkennzeichen [FKZ] 01NVF17035) project, an intelligent assistance service was developed. PATIENTS AND METHODS: New triage algorithms were developed for the 20 most frequent leading symptoms on the basis of established triage systems (emergency severity index, ESI; Manchester triage system, MTS) and provided as web-based intelligent assistance services on mobile devices. To evaluate the validity, reliability, and safety of the new OPTINOFA triage instrument, a pilot study was conducted in three EDs after ethics committee approval. RESULTS: In the pilot study, nâ¯= 718 ED patients were included (age 59.1⯱ 22 years; 349 male, 369 female). With respect to disposition (out-/inpatient), a sensitivity of 91.1% and a specificity of 40.7%, and a good correlation with the OPTINOFA triage levels were detected (Spearman's rank correlation ρâ¯= 0.41). Furthermore, the area under the curve (AUC) for prediction of disposition according to the OPTINOFA triage level was 0.73. The in-hospital mortality rate of OPTINOFA triage levels 4 and 5 was 0%. The association between the length of ED stay and the OPTINOFA triage level was shown to be significant (pâ¯< 0.001). CONCLUSION: The results of the pilot study demonstrate the safety and validity of the new triage system OPTINOFA. By definition of both urgency and emergency care level, new customized perspectives for load reduction in German EDs via a closer cooperation between out- and inpatient sectors of emergency care could be established.