A Parent-Focused Survey to Assess the Effects of the COVID-19 Pandemic on Patients With Duchenne Muscular Dystrophy
Öz
The aim of this study was to evaluate the effect of the Coronavirus Disease (COVID-19) on the use of health and rehabilitation services, physical and general health conditions of individuals with Duchenne Muscular Dystrophy (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 (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 (81%) and stress management (42%). More than half of the individuals were found to be adversely affected in general health (52%), mobility (56%), range of motion (54%), mood (66%), and social dialogs (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 (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.
Anahtar Kelimeler
Muscular dystrophy Duchenne COVID-19 pandemic Health care utilization
Proje Numarası
The study was approved by the Non-interventional Clinical Research Ethics Committee of Lokman Hekim University (September 13, 2021, GO: 2021102).
Kaynakça
- Barton B, Peat J. 2014. Medical statistics: A guide to SPSS, data analysis and critical appraisal. John Wiley & Sons, New York, US, pp: 408.
- Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, Case LE, Clemens PR, Hadjiyannakis S, Pandya S. 2018. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol, 17(3): 251-267.
- Cacioppo M, Bouvier S, Bailly R, Houx L, Lempereur M, Mensah-Gourmel J, Kandalaft C, Varengue R, Chatelin A, Vagnoni J. 2021. Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey. Annals Physical Rehab Medic, 64(3): 101429.
- Camden C, Pratte G, Fallon F, Couture M, Berbari J, Tousignant M. 2020. Diversity of practices in telerehabilitation for children with disabilities and effective intervention characteristics: results from a systematic review. Disab Rehab, 42(24): 3424-3436.
- Falzarano MS, Scotton C, Passarelli C, Ferlini A. 2015. Duchenne muscular dystrophy: from diagnosis to therapy. Molecules, 20(10): 18168-18184.
- Goldschmidt K. 2020. The COVID-19 pandemic: Technology use to support the wellbeing of children. J Pediat Nurs, 53: 88.
- Hiller LB, Wade CK. 1992. Upper extremity functional assessment scales in children with Duchenne muscular dystrophy: a comparison. Archives Physical Medic Rehab, 73(6): 527-534.
- Karatekin BD, Icagasioglu A, Sahin SN, Kacar G, Bayram F. 2021. How did the lockdown imposed due to COVID-19 affect patients with cerebral palsy? Pediatr Phys Ther, 33(4): 246-249.
- Matsumura T, Takada H, Kobayashi M, Nakajima T, Ogata K, Nakamura A, Funato M, Kuru S, Komai K, Futamura N. 2021. A Web-based questionnaire survey on the influence of coronavirus disease-19 on the care of patients with muscular dystrophy. Neuromuscular Disord, 31(9): 839-846.
- Mosqueira M, Zeiger U, Förderer M, Brinkmeier H, Fink RH. 2013. Cardiac and respiratory dysfunction in Duchenne muscular dystrophy and the role of second messengers. Medic Res Rev, 33(5): 1174-1213.
- Nishizawa H, Nakamura A. 2021. Changes in motor function in Duchenne muscular dystrophy patients after travel restrictions due to COVID‐19. Muscle Nerve, 64(3): 357-361.
- Ping W, Zheng J, Niu X, Guo C, Zhang J, Yang H, Shi Y. 2020. Evaluation of health-related quality of life using EQ-5D in China during the COVID-19 pandemic. PloS One, 15(6): e0234850.
- Saeed T, Tahir S, Mahmood N. 2020. The impact of COVID-19 on parents of children with special needs. J Anxiety Depress, 3(2): 129.
- Sancho NB, Mondragon NI, Santamaria MD, Munitis AE. 2021. The Well-being of children in lock-down: Physical, emotional, social and academic impact. Children and Youth Serv Rev, 127: 106085.
- Sobierajska-Rek A, Mański Ł, Jabłońska-Brudło J, Śledzińska K, Ucińska A, Wierzba J. 2021. Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic. Wiener Klinische Wochenschrift, 133(7): 344-350.
- Sobierajska-Rek A, Mański Ł, Jabłońska-Brudło J, Śledzińska K, Wasilewska E, Szalewska D. 2021. Respiratory Telerehabilitation of boys and young men with duchenne muscular dystrophy in the COVID-19 pandemic. Int J Environ Res Pub Health, 18(12): 6179.
- Veerapandiyan A, Wagner KR, Apkon S, McDonald CM, Mathews KD, Parsons JA, Wong BL, Eichinger K, Shieh PB, Butterfield, RJ. 2020. The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID‐19 pandemic. Muscle Nerve, 62(1): 41-45.
- Vignos P, Archibald K. 1960. Maintenance of ambulation in childhood muscular dystrophy. J Chronic Diseas, 12(2): 273-290.
Öz
Destekleyen Kurum
Lokman Hekim Üniversitesi
Proje Numarası
The study was approved by the Non-interventional Clinical Research Ethics Committee of Lokman Hekim University (September 13, 2021, GO: 2021102).
Kaynakça
- Barton B, Peat J. 2014. Medical statistics: A guide to SPSS, data analysis and critical appraisal. John Wiley & Sons, New York, US, pp: 408.
- Birnkrant DJ, Bushby K, Bann CM, Apkon SD, Blackwell A, Brumbaugh D, Case LE, Clemens PR, Hadjiyannakis S, Pandya S. 2018. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurol, 17(3): 251-267.
- Cacioppo M, Bouvier S, Bailly R, Houx L, Lempereur M, Mensah-Gourmel J, Kandalaft C, Varengue R, Chatelin A, Vagnoni J. 2021. Emerging health challenges for children with physical disabilities and their parents during the COVID-19 pandemic: The ECHO French survey. Annals Physical Rehab Medic, 64(3): 101429.
- Camden C, Pratte G, Fallon F, Couture M, Berbari J, Tousignant M. 2020. Diversity of practices in telerehabilitation for children with disabilities and effective intervention characteristics: results from a systematic review. Disab Rehab, 42(24): 3424-3436.
- Falzarano MS, Scotton C, Passarelli C, Ferlini A. 2015. Duchenne muscular dystrophy: from diagnosis to therapy. Molecules, 20(10): 18168-18184.
- Goldschmidt K. 2020. The COVID-19 pandemic: Technology use to support the wellbeing of children. J Pediat Nurs, 53: 88.
- Hiller LB, Wade CK. 1992. Upper extremity functional assessment scales in children with Duchenne muscular dystrophy: a comparison. Archives Physical Medic Rehab, 73(6): 527-534.
- Karatekin BD, Icagasioglu A, Sahin SN, Kacar G, Bayram F. 2021. How did the lockdown imposed due to COVID-19 affect patients with cerebral palsy? Pediatr Phys Ther, 33(4): 246-249.
- Matsumura T, Takada H, Kobayashi M, Nakajima T, Ogata K, Nakamura A, Funato M, Kuru S, Komai K, Futamura N. 2021. A Web-based questionnaire survey on the influence of coronavirus disease-19 on the care of patients with muscular dystrophy. Neuromuscular Disord, 31(9): 839-846.
- Mosqueira M, Zeiger U, Förderer M, Brinkmeier H, Fink RH. 2013. Cardiac and respiratory dysfunction in Duchenne muscular dystrophy and the role of second messengers. Medic Res Rev, 33(5): 1174-1213.
- Nishizawa H, Nakamura A. 2021. Changes in motor function in Duchenne muscular dystrophy patients after travel restrictions due to COVID‐19. Muscle Nerve, 64(3): 357-361.
- Ping W, Zheng J, Niu X, Guo C, Zhang J, Yang H, Shi Y. 2020. Evaluation of health-related quality of life using EQ-5D in China during the COVID-19 pandemic. PloS One, 15(6): e0234850.
- Saeed T, Tahir S, Mahmood N. 2020. The impact of COVID-19 on parents of children with special needs. J Anxiety Depress, 3(2): 129.
- Sancho NB, Mondragon NI, Santamaria MD, Munitis AE. 2021. The Well-being of children in lock-down: Physical, emotional, social and academic impact. Children and Youth Serv Rev, 127: 106085.
- Sobierajska-Rek A, Mański Ł, Jabłońska-Brudło J, Śledzińska K, Ucińska A, Wierzba J. 2021. Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic. Wiener Klinische Wochenschrift, 133(7): 344-350.
- Sobierajska-Rek A, Mański Ł, Jabłońska-Brudło J, Śledzińska K, Wasilewska E, Szalewska D. 2021. Respiratory Telerehabilitation of boys and young men with duchenne muscular dystrophy in the COVID-19 pandemic. Int J Environ Res Pub Health, 18(12): 6179.
- Veerapandiyan A, Wagner KR, Apkon S, McDonald CM, Mathews KD, Parsons JA, Wong BL, Eichinger K, Shieh PB, Butterfield, RJ. 2020. The care of patients with Duchenne, Becker, and other muscular dystrophies in the COVID‐19 pandemic. Muscle Nerve, 62(1): 41-45.
- Vignos P, Archibald K. 1960. Maintenance of ambulation in childhood muscular dystrophy. J Chronic Diseas, 12(2): 273-290.
Ayrıntılar
| Birincil Dil | İngilizce |
|---|---|
| Konular | Sağlık Kurumları Yönetimi |
| Bölüm | Araştırma Makalesi |
| Yazarlar | |
| Proje Numarası | The study was approved by the Non-interventional Clinical Research Ethics Committee of Lokman Hekim University (September 13, 2021, GO: 2021102). |
| Yayımlanma Tarihi | 1 Mayıs 2022 |
| Gönderilme Tarihi | 10 Mart 2022 |
| Kabul Tarihi | 25 Mart 2022 |
| Yayımlandığı Sayı | Yıl 2022 Cilt: 5 Sayı: 2 |
