A fact‐finding survey of medical care provided to neuromuscular disease patients at the National Center of Neurology and Psychiatry in Japan

<jats:title>Abstract</jats:title><jats:sec><jats:title>Subject</jats:title><jats:p>The aim of the present study was to conduct a fact‐finding survey of medical care practices that are provided to neuromuscular diseases (NMDs) patients and to identify the placement rate and timing of implementation for each of the diseases.</jats:p></jats:sec><jats:sec><jats:title>Method</jats:title><jats:p>All 3756 NMD patients who were admitted to the Neurology ward between April 2015 and March 2020 were included. This was a retrospective survey of specific medical care practices (percutaneous endoscopic gastrostomy (PEG) and tracheotomy) implemented.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>The results showed that 325 patients (8.7%) had PEG placements, and 78 patients (2.1%) had tracheotomies. When the course of each disease from onset to medical care was examined, the diseases for which medical care was received soon after onset were MND, MSA, DLB, and progressive supranuclear palsy, whereas muscular dystrophy, myopathy, and Parkinson's disease (PD) were diseases with a relatively long time between disease onset and medical care. Discussion: In conducting the fact‐finding survey on medical care practices for NMD, the following were taken into consideration: (i) difficulty in conducting the investigation due to NMD being a rare disease; (ii) existence of a difference in age of onset and progression of the diseases; and (iii) differences in treatment environments due to disparities in treatment policies among medical institutions providing medical care and local support systems.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>The course of medical care provision for NMD patients varied depending on the disease, and the difference in the time course of progression of symptoms greatly impacted patients' decision making.</jats:p></jats:sec>