Balidemaj Adelina, Parsamanesh Parmis, Vysochyn Mykhailo
Clinical Sciences, Saint James School of Medicine, Chicago, USA.
Cardiology, Saint James School of Medicine, The Valley, AIA.
Cureus. 2023 May 28;15(5):e39597. doi: 10.7759/cureus.39597. eCollection 2023 May.
Duchenne muscular dystrophy (DMD) is an inherited disorder that results in increasing muscle degeneration and muscle weakness because of a mutation in the dystrophin protein. Despite there being no cure for this condition, early diagnosis can slow down the progression of muscle weakness. Studies have shown that families and caregivers of patients with DMD have limited access to support systems, further intensifying their responsibilities. Since the mental well-being of families and caregivers of patients with DMD is crucial for healthy and progressive family dynamics, ascertaining the psychological and social impacts it has on the caregivers will help improve the quality of life of patients with this terminal illness. This study aims to recognize the direct and indirect effects on the caregiver caring for the individual diagnosed with DMD, with a primary focus on the health-related quality of life (HRQoL), psychological well-being, and financial burden. Using the PubMed database and a particular arrangement of Medical Subject Headings (MeSH) terms, 93 articles were retrieved and evaluated, of which eight only met the inclusion criteria. The eight chosen articles were organized into a table and dissected further for their importance and relevance to this review article. This literature review highlights the most significant information from each article and is individually analyzed to deduce the main burdens on caregivers of patients with the terminal illness of DMD. Conclusively, this review highlights that caregivers of individuals with DMD bear a substantial burden that negatively affects their HRQoL, contributes to a decline in psychological well-being, and places an increased financial burden on the family.
杜氏肌营养不良症（DMD）是一种遗传性疾病，由于肌营养不良蛋白发生突变，导致肌肉不断退化和肌无力。尽管这种疾病无法治愈，但早期诊断可以减缓肌无力的进展。研究表明，DMD患者的家庭和照料者获得支持系统的机会有限，这进一步加重了他们的负担。由于DMD患者家庭和照料者的心理健康对于健康和积极的家庭动态关系至关重要，确定其对照料者的心理和社会影响将有助于提高这种绝症患者的生活质量。本研究旨在认识对照料被诊断患有DMD的个体的照料者产生的直接和间接影响，主要关注与健康相关的生活质量（HRQoL）、心理健康和经济负担。通过使用PubMed数据库以及医学主题词（MeSH）术语的特定组合，检索并评估了93篇文章，其中只有8篇符合纳入标准。将这8篇选定的文章整理成表格，并进一步剖析它们对本综述文章的重要性和相关性。这篇文献综述突出了每篇文章中最重要的信息，并对其进行单独分析，以推断DMD绝症患者照料者的主要负担。总之，本综述强调，DMD患者的照料者承担着沉重的负担，这对他们的HRQoL产生负面影响，导致心理健康下降，并给家庭带来更大的经济负担。
