A Parent-Focused Survey to Assess the Effects of the COVID-19 Pandemic on Patients With Duchenne Muscular Dystrophy

Authors : Azize Reda TUNÇ, Halil İbrahim ÇELİK, Mustafa SARI, Demet ÖZTÜRK, Aynur Ayşe KARADUMAN

Pages : 275-280

Doi:10.19127/bshealthscience.1085049

View : 45 | Download : 10

Publication Date : 2022-05-01

Article Type : Research Paper

Abstract :The aim of this study was to evaluate the effect of the Coronavirus Disease insert ignore into journalissuearticles values(COVID-19); on the use of health and rehabilitation services, physical and general health conditions of individuals with Duchenne Muscular Dystrophy insert ignore into journalissuearticles values(DMD); from the perspective of parents. A questionnaire consisting of 35 questions was created by the research team. The data were obtained from the parents/primary caregivers of individuals whose diagnoses were confirmed by genetic testing and accessed online via the DMD Families Association. It was reported that 5.5% of the 272 individuals with DMD insert ignore into journalissuearticles values(age: 10.43±6.42 years); included in the study were infected with COVID-19. It was observed that the major problems encountered during the pandemic were obtaining health services insert ignore into journalissuearticles values(81%); and stress management insert ignore into journalissuearticles values(42%);. More than half of the individuals were found to be adversely affected in general health insert ignore into journalissuearticles values(52%);, mobility insert ignore into journalissuearticles values(56%);, range of motion insert ignore into journalissuearticles values(54%);, mood insert ignore into journalissuearticles values(66%);, and social dialogs insert ignore into journalissuearticles values(62%);. Furthermore, it was determined that 71% of the individuals took a break from the center where they received outpatient physiotherapy for 3 months or more, and only 6% could receive telerehabilitation service and the level of satisfaction was relatively moderate insert ignore into journalissuearticles values(10-point visual analog scale: 6.3±2.6);. The parents reported that the health care utilization and physical-general health status of individuals with DMD were significantly adversely affected during the COVID-19 pandemic. The present study has an exploratory feature regarding the problems faced by individuals with DMD during the COVID-19 pandemic. Therefore, we think that it will guide future studies in preventing the negative effects of situations such as pandemics or natural disasters.
Keywords : Muscular dystrophy, Duchenne, COVID 19 pandemic, Health care utilization

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