1. A Web-based questionnaire survey on the influence of coronavirus disease-19 on the care of patients with muscular dystrophy
- Author
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Tsuyoshi Matsumura, Masashi Aoki, Kouzou Hanayama, Masanori P. Takahashi, T. Fukudome, H. Arahata, Naonobu Futamura, Harumasa Nakamura, Michio Kobayashi, Kiyonobu Komai, Hiroya Hashimoto, Yoshihide Sunada, Akinori Nakamura, Satoshi Kuru, Masatoshi Ishizaki, Yoshiki Adachi, Michinori Funato, Takashi Nakajima, Katsuhisa Ogata, Hiroto Takada, Tohru Matsuura, and Shugo Suwazono
- Subjects
0301 basic medicine ,Quality of life ,medicine.medical_specialty ,Activities of daily living ,COVID-19, coronavirus disease-19 ,medicine.medical_treatment ,Duchenne muscular dystrophy ,Article ,Coronavirus disease-19 ,03 medical and health sciences ,Undersupply ,0302 clinical medicine ,Quality of life (healthcare) ,Surveys and Questionnaires ,medicine ,Infection control ,Humans ,Muscular dystrophy ,Genetics (clinical) ,Internet ,Rehabilitation ,Respiratory care ,business.industry ,SARS-CoV-2 ,Questionnaire ,COVID-19 ,Caregiver burden ,medicine.disease ,Muscular Dystrophy, Duchenne ,030104 developmental biology ,Neurology ,Pediatrics, Perinatology and Child Health ,Emergency medicine ,Neurology (clinical) ,business ,030217 neurology & neurosurgery ,SARS-CoV-2, severe acute respiratory syndrome coronavirus-2 - 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.
- Published
- 2021