GONCA ÖZYURT, Erhan BAYRAM, Pakize KARAOĞLU, Semra Hız KURUL, Uluç YİŞ

Duchenne muskuler distrofisi tanısı olan çocukların yaşam ve uyku kaliteleri ile annelerinin anksiyete düzeyi: Bir olgu kontrol çalışması

Amaç: Duchenne musküler distrofi (DMD) birçok musküler distrofi arasında en ciddi olanıdır. DMD'nin etyolojisi ve patofizyolojisi üzerine yapılan araştırmalardaki hızlı ilerleyişe rağmen, tedavisi henüz mümkün değildir. DMD gibi ciddi kronik bir hastalığın varlığı hem hastalar hem de bakımverenler üzerinde büyük etkilere sebep olabilir. Biz bu çalışmada DMD tanılı olgular ile sağlıklı kontrollerin yaşam ve uyku kalitesini karşılaştırmayı aynı zamanda olgu ve kontrollerin annelerinin de anksiyete düzeyini değerlendirmeyi planladık.Yöntem: Çalışmaya 17 DMD tanılı olgu ile 20 sağlıklı kontrol dahil edilmiştir. Olgu ve kontrollerin hepsi erkektir. Olgu ve kontrollerin sosyal durumu sosyodemografik veri formu ile değerlendirilmiştir. Çocukların yaşam kalitelerini değerlendirmek için çocuklar ve ebeveynleri tarafından doldurulan Çocuklar için Yaşam Kalitesi Ölçeği (ÇİYKÖ) kullanılmıştır. Pittsburg Uyku Kalitesi İndeksi (PUKİ) çocukların uyku kalitesini değerlendirmek için kullanılan bir özbildirim ölçeğidir. Annelerin anksiyetesi Durumluk- Süreklilik Anksiyete Ölçeği (STAI)-durumluk ve süreklilik formları ile değerlendirilmiştir. Mann Whitney U ve kikare istatistiksel analiz olarak kullanılmıştır.Bulgular:: Olgu ve kontrollerin hem ÇİYKÖ ebeveyn hem ÇİYKÖ çocuk formları kıyaslandığında istatistiksel anlamlı fark bulunmuştur. Olgu ve kontrollerin uyku kalitesi arasındaki fark da istatistiksel olarak anlamlı çıkmıştır. STAI durumluk ve süreklilik ölçeklerinde olgu ve kontrollerin annelerinin anksiyete düzeyleri arasında anlamlı fark bulunmamıştır.Sonuç: Bizim çalışmamızın temel bulgusu DMD'li olguların uykuda daha fazla zorlukları olduğu ve yaşam kalitelerinin sağlıklı kontrollere göre daha düşük olduğudur. Motor işlevsellikteki zorlukların duygusal, sosyal işlevselliğe ve belki de çocukların uyku kalitesine etkileri olabilir

Quality of Life and Sleep in Children Diagnosed with Duchenne Muscular Dystrophy and Their Mothers’ Level of Anxiety: A Case- Control Study

Objective: Duchenne Muscular Dystrophy (DMD) is the most severe form among a variety of muscular dystrophies. While studies into the etiology and pathophysiology of DMD have progressed fast, there still is no therapy for the disease. The presence of a severe chronic disease such as DMD can seriously affect patients as well as caregivers. In this study, we planned to compare quality of life and sleep between cases diagnosed as DMD and healthy controls while at the same time assessing the levels of anxiety in the patients’ mothers.Method: In this study, 17 cases with a diagnosis of DMD and 20 healthy controls were enrolled. All the patients and controls were male. The social status of patients and controls was assessed with a sociodemographic data form. To evaluate the children’s quality of life, the Pediatric Quality of Life Inventory (PedsQL) was completed by children and parents. The Pittsburgh Sleep Quality Index (PSQI) is a selfreported questionnaire used to evaluate the quality of sleep in children. We measured the mothers’ anxiety with the State-Trait Anxiety Inventory (STAI) - state anxiety and trait anxiety forms. Mann-Whitney U test and chi square test were used for statistical analysis.Results: A statistically significant difference was found in comparing both parents’ and children’s PedsQL forms between patients and controls. The quality of sleep also differed significantly between cases and controls. In the STAI state and trait anxiety forms, no significant difference was found between the anxiety levels of patients’ mothers and the control persons’ mothers. Conclusion: As key result of our study, we found that there are more problems in the DMD patients’ sleep, and the quality of life is lower than in the healthy controls. Problems in motor functionality may affect emotional and social functionality and possibly the quality of children’s sleep

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