A web-based questionnaire survey on the influence of coronavirus disease-19 on the care of patients with muscular dystrophy

Tsuyoshi Matsumura, Hiroto Takada, Michio Kobayashi, Takashi Nakajima, Katsuhisa Ogata, Akinori Nakamura, Michinori Funato, Satoshi Kuru, Kiyonobu Komai, Naonobu Futamura, Yoshiki Adachi, Hajime Arahata, Takayasu Fukudome, Masatoshi Ishizaki, Shugo Suwazono, Masashi Aoki, Tohru Matsuura, Masanori P. Takahashi, Yoshihide Sunada, Kouzou HanayamaHiroya Hashimoto, Harumasa Nakamura

Research output: Contribution to journalArticlepeer-review

Abstract

To clarify the influence of coronavirus disease-19 (COVID-19) on the care of muscular dystrophy patients, we performed a questionnaire survey that was posted on the internet on May 11, 2020. By the end of July 2020, 542 responses had been collected. Approximately 30% of patients postponed regular consultations, and one-quarter of patients who received consultation more than once a month used telephone consultations. Two of 84 patients with Duchenne muscular dystrophy had reduced their steroid doses. A shortage of ventilator accessories and infection protection equipment occurred following the onset of COVID-19, and this shortage had a serious impact on medical care and infection prevention measures. Reductions in rehabilitation and other services, and avoidance of outings, led to a decrease in exercise and an increase in caregiver burden. Inpatients were restricted from going out and visiting family members. More than 20% of patients reported physical or mental complaints; however, few required treatment. COVID-19 has seriously affected the activities and quality of life of patients with muscular dystrophy. We will continue this survey and analyze the longitudinal changes.

Original languageEnglish
JournalNeuromuscular Disorders
DOIs
Publication statusAccepted/In press - 2021

Keywords

  • Activities of daily living
  • Coronavirus disease-19
  • Muscular dystrophy
  • Quality of life
  • Respiratory care
  • Undersupply

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Neurology
  • Clinical Neurology
  • Genetics(clinical)

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