Evaluation of Quality of Life and Levels of Participation in Patients with Duchenne Muscular Dystrophy

Year 2023, Volume: 3 Issue: 3, 323 - 328, 22.12.2023

Erman Berk Çelik , Melek Yavuzer

https://doi.org/10.58252/artukluder.1239998

Abstract

Introduction: The aim of this study was to investigate the quality of life and levels of participation levels in individuals with Duchenne muscular dystrophy (DMD) and assess the impact of preserved upper extremity muscle power and wrist functions on their quality of life and participation levels. The study was performed on 25 volunteers with DMD who were followed at Bakırköy Municipality, Atatürk Spor ve Yaşam Köyü from March to July 2015.
Methods: Quality of life was evaluated using the Short-Form-36 (SF-36), participation levels were assessed using the Craig Handicap Assessment and Rating Technique-Short Form (CHART-SF), upper extremity power was evaluated manual muscle test, and hand and wrist functions were assessed with the Duruöz Hand Index.
Results: SF-36 showed that Physical Health (34.31±5.32) and Mental Health (49.95±10.54) levels were fair to good. CHART-SF revealed that the patients demonstrated moderate to good levels in Physical Independence (61.12±14.22), Cognitive Independence (55.16±29.52), Mobility (64.64±17.87), and Social Integration (81.78±23.11), while the Work dimension was notably low (12.12±19.32). Patients exhibited moderate and low levels of muscle strength in the shoulder, elbow, and hand. Duruöz Hand Index indicated moderate to good hand function. It shows a relationship between shoulder flexion, shoulder extension, and shoulder abduction with the “Physical Health Component” of the SF-36 (p<0.05). It highlights a statistically significant and positive relationship between the “Work” dimension of the CHART-SF and the “Mental Health Component” of the SF-36 (p<0.05).
Conclusion: Patients with DMD revealed fair to good levels of Physical Independence, Cognitive Independence, Mobility, and Social Integration whereas Occupation level was low. It has been determined that impairment in upper extremity use and restriction in social participation affect physical and mental domains of quality of life.

Keywords

Duchenne muscular dystrophy, Activity and participation, Quality of life

Duchenne Musküler Distrofili Hastalarda Yaşam Kalitesi ve Katılım Seviyelerinin Değerlendirilmesi

Abstract

Giriş: Bu çalışmanın amacı, Duchenne kas distrofisi (DMD) olan bireylerin yaşam kalitesini ve katılım düzeylerini araştırmak ve korunmuş üst ekstremite ve el bileği fonksiyonlarının yaşam kalitesi ve katılım kısıtlamaları üzerindeki etkisini değerlendirmektir. Çalışma, Mart – Temmuz 2015 tarihleri arasında Bakırköy Belediyesi Atatürk Spor ve Yaşam Köyü’nde takip edilen 25 DMD gönüllüsü üzerinde gerçekleştirildi.
Yöntem: Yaşam kalitesi Short-Form-36 (SF-36) kullanılarak değerlendirilirken, katılım düzeyleri Craig Handicap Assessment and Rating Technique-Short Form (CHART-SF) ile değerlendirildi. Üst ekstremite gücü manuel kas testi ile değerlendirildi ve el ve el bileği fonksiyonları Duruöz El İndeksi ile değerlendirildi.
Bulgular: SF-36, Fiziksel Sağlık (34.31±5.32) ve Ruhsal Sağlık (49.95±10.54) seviyelerinin orta düzeyde olduğunu gösterdi. CHART-SF, Hastaların Fiziksel Bağımsızlık (61.12±14.22), Bilişsel Bağımsızlık (55.16±29.52), Hareketlilik (64.64±17.87) ve Sosyal Entegrasyon (81.78±23.11) açısından orta düzeyde olduğunu gösterdi, ancak Çalışma boyutunun belirgin bir şekilde düşük olduğunu (12.12±19.32) ortaya koydu. Hastalar, omuz, dirsek ve elde orta ve düşük düzeylerde kas gücü sergiledi. Duruöz El İndeksi, orta düzeyde el fonksiyonunu gösterdi.
SF-36'nın “Fiziksel Sağlık Bileşeni” ile omuz fleksiyonu, omuz ekstansiyonu ve omuz abduksiyonu arasında ilişki olduğunu göstermektedir (p<0.05). Ayrıca, CHART-SF’nin “Çalışma” boyutu ile SF-36’nın “Ruhsal Sağlık Bileşeni” arasında istatistiksel olarak anlamlı ve pozitif bir ilişki olduğunu vurgulamaktadır (p<0.05).
Sonuç: DMD'li hastalar, Fiziksel Bağımsızlık, Bilişsel Bağımsızlık, Hareketlilik ve Sosyal Entegrasyon konularında orta düzeyden iyiye kadar seviyeler gösterirken, İş seviyesi düşük olarak ortaya çıktı. Üst ekstremite kullanımındaki bozulma ve sosyal katılımdaki kısıtlamaların, yaşam kalitesinin fiziksel ve zihinsel alanlarını etkilediği belirlenmiştir.

Keywords

Duchenne kas distrofi, Aktivite ve katılım, Yaşam kalitesi

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