E- ISSN: 3023-6215
COVID-19 and Patients with Muscular Dystrophy: How Did the Pandemic Affect Patients and Their Medical Care? [Anatol J Med ]
Anatol J Med . 2024; 34(2): 159-165 | DOI: 10.4274/anatoljmed.2023.23911

COVID-19 and Patients with Muscular Dystrophy: How Did the Pandemic Affect Patients and Their Medical Care?

Göksel Tanıgör1, Filiz Meryem Sertpoyraz2, Murat Yıldırım Kale3, Bakiye Tunçay4, Figen Baydan5
1İzmir University of Economics Faculty of Medicine, Department of Internal Sciences/Physical Medicine and Rehabilitation, İzmir, Turkey
2İzmir Bakırçay University Faculty of Medicine, Department of Physical Medicine and Rehabilitation, İzmir, Turkey
3University of Health Sciences Turkey, İzmir Tepecik Education and Training Hospital, Clinic of Neurology, İzmir, Turkey
4University of Health Sciences Turkey, İzmir Tepecik Education and Training Hospital, Clinic of Neuromuscular Diseases, İzmir, Turkey
5University of Health Sciences Turkey, İzmir Tepecik Education and Training Hospital, Clinic of Pediatric Neurology, İzmir, Turkey

Objective: This study investigated the effects of Coronavirus disease-2019 (COVID-19) related lockdowns and the pandemic in patients with muscular dystrophy who require regular hospital admissions and follow-ups. Moreover, the effects of “fear of COVID-19” on these effects were also measured.
Methods: One hundred and five muscular dystrophy patients who were admitted to the neuromuscular diseases tertiary care clinic were evaluated. The patients’ socio-demographic and clinical characteristics were recorded, and their fear of COVID-19 was assessed using the “fear of COVID-19 scale”, and they were asked about the problems they encountered during the pandemic and lockdowns.
Results: We found that the patients had major restrictions in their access to healthcare, physical therapy/rehabilitation, and reduced physical and social activities. Moreover, they subjectively stated that their disease worsened with the pandemic. These restrictions were found to correlate with their fear of COVID-19 levels.
Conclusion: Patients with muscular dystrophy were found to have changes in their physical activity, participation in rehabilitation, problems with reaching healthcare services, and social problems. These problems were associated with their fear of COVID-19. As routine access to healthcare and therapies is crucial for these patients, both patients and health professionals should keep the potential harm of restrictions and fear in mind and strive for optimal solutions.

Keywords: Neuromuscular diseases, muscular dystrophy, COVID-19, medical care, rehabilitation

COVID-19 ve Kas Distrofili Hastalar: Pandemi Hastaları ve Tıbbi Bakımlarını Nasıl Etkiledi?

Göksel Tanıgör1, Filiz Meryem Sertpoyraz2, Murat Yıldırım Kale3, Bakiye Tunçay4, Figen Baydan5
1İzmir University of Economics Faculty of Medicine, Department of Internal Sciences/Physical Medicine and Rehabilitation, İzmir, Turkey
2İzmir Bakırçay University Faculty of Medicine, Department of Physical Medicine and Rehabilitation, İzmir, Turkey
3University of Health Sciences Turkey, İzmir Tepecik Education and Training Hospital, Clinic of Neurology, İzmir, Turkey
4University of Health Sciences Turkey, İzmir Tepecik Education and Training Hospital, Clinic of Neuromuscular Diseases, İzmir, Turkey
5University of Health Sciences Turkey, İzmir Tepecik Education and Training Hospital, Clinic of Pediatric Neurology, İzmir, Turkey

Amaç: Bu çalışma, düzenli hastaneye yatış ve takip gerektiren musküler distrofi hastalarında Koronavirüs hastalığı-2019 (COVID-19) ile ilgili sokağa çıkma kısıtlamalarının ve pandeminin etkilerini araştırmayı amaçladı. Ayrıca bu etkiler üzerinde “COVID-19 korkusu”nun etkisi de ölçüldü.
Yöntem: Nöromusküler hastalıklar üçüncü basamak kliniğine başvuran 105 musküler distrofi hastası değerlendirildi. Hastaların sosyo-demografik ve klinik özellikleri kayıt altına alınarak, “COVID-19 korku ölçeği” ile COVID-19 korkuları değerlendirildi, pandemi ve karantina sürecinde karşılaştıkları sorunlar sorgulandı.
Bulgular: Hastaların sağlık hizmetlerine erişiminde, fizik tedavi/rehabilitasyonda önemli kısıtlamalar olduğu, fiziksel aktivite ve sosyal aktivitelerinde azalma olduğu saptandı. Üstelik pandeminin getirdiği değişikliklerle hastalıklarının kötüleştiğini sübjektif olarak belirtmişlerdir. Bu kısıtlamaların COVID-19 seviyelerinden duydukları korku ile ilişkili olduğu bulundu.
Sonuç: Musküler distrofili hastaların fiziksel aktivitelerinde değişiklik, rehabilitasyona katılım, sağlık hizmetlerine ulaşmada sorunlar ve sosyal sorunlar yaşadıkları saptanmıştır. Bu sorunların COVID-19 korkularıyla ilişkili olduğu tespit edildi. Bu hastalar için sağlık ve tedavilere rutin erişimleri çok önemli olduğundan, hem hastalar hem de sağlık çalışanları kısıtlamaların olası zararlarını ve korkularını akılda tutmalı ve optimal çözümler için çaba göstermelidir.

Anahtar Kelimeler: Nöromusküler hastalıklar, musküler distrofi, COVID-19, tıbbi bakım, rehabilitasyon

Corresponding Author: Göksel Tanıgör, Türkiye
Manuscript Language: English
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