Accuracy of Telephone‐Based Follow‐Up in Identifying Critical Events in Children With Duchenne Muscular Dystrophy Receiving Standard of Care

INTRODUCTION/AIMS: Costs associated with in-person outpatient services in childhood neuromuscular disorders represent a major economic burden, and it is often difficult to bring children with these progressive disorders to health care facilities owing to their impaired ambulation. Follow-up of specialists by telephonic consultations after the initial assessment and treatment plan may reduce the costs related to outpatient in-person visits in children with Duchenne muscular dystrophy (DMD). The present study was conducted to evaluate the diagnostic accuracy of telephone consultation to identify critical clinical events related to disease progression, development of new comorbidities, non-compliance with treatment, and medication-related adverse events in children with DMD. METHODS: Children aged ≥ 5 years with DMD visiting a tertiary care pediatric center were enrolled in the study. Parents of these children were contacted telephonically by a physician 48-72 h prior to the child's scheduled outpatient appointment at the hospital. Subsequently, all children were assessed during the scheduled visit at the out-patient facility by another specialist who was blinded to the telephone consultation. The diagnostic accuracy of telephone consultation was determined by comparison with face-to-face consultation. RESULTS: A total of 58 consecutive eligible children were enrolled and 30 were included for final analysis. Telephone consultation demonstrated a sensitivity of 95.2%, specificity of 81.1%, and positive and negative predictive values of 91.9% and 88.2%, respectively, for identifying critical clinical events. DISCUSSION: The physician-initiated telephone consultation has acceptable diagnostic accuracy to identify critical events that need face-to-face consultation among children with DMD.