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肌肉萎缩症男童母亲的健康相关生活质量和情绪困扰与性别和年龄匹配对照组比较。

Health-Related Quality of Life and Emotional Distress Among Mothers of Sons With Muscular Dystrophy as Compared to Sex- and Age Group-Matched Controls.

机构信息

Center for Biobehavioral Health, The Abigail Wexner Research Institute at 2650Nationwide Children's Hospital, OH, USA.

Department of Pediatrics, 12305The Ohio State University, OH, USA.

出版信息

J Child Neurol. 2021 Mar;36(3):177-185. doi: 10.1177/0883073820962927. Epub 2020 Oct 9.

Abstract

The health-related quality of life and emotional distress among mothers of sons with Duchenne or Becker muscular dystrophies (n = 82) were compared to sex- and age group-matched controls (n = 26). Participants self-reported health-related quality of life for themselves and their son(s), emotional distress, and mood/anxiety-related medication. Mothers reported poorer health-related quality of life across all domains of their health-related quality of life, as well as higher levels of emotional distress. Clinically elevated symptoms of anxiety were reported by 39% of mothers. Mothers' report of poorer health-related quality of life for their son(s) was a significant predictor of worse health-related quality of life and emotional distress for themselves across most domains. Additionally, older age of mothers predicted greater energy/less fatigue and lower levels of anxiety. Results highlight the need for screening emotional distress among mothers, as well as consideration for accessible interventions to improve the psychosocial functioning among these families.

摘要

本研究比较了 82 名杜氏肌营养不良症或贝克肌营养不良症男孩的母亲与性别和年龄匹配的对照组(n=26)的健康相关生活质量和情绪困扰。参与者自我报告了自己和儿子的健康相关生活质量、情绪困扰以及与情绪/焦虑相关的药物治疗情况。母亲们报告称,在所有健康相关生活质量领域,以及在情绪困扰方面,她们的健康相关生活质量都较差。有 39%的母亲报告有明显的焦虑症状。母亲们对儿子健康相关生活质量的较差报告,是她们在大多数领域健康相关生活质量和情绪困扰较差的一个重要预测因素。此外,母亲年龄越大,精力越充沛/疲劳感越低,焦虑程度越低。研究结果强调了对母亲进行情绪困扰筛查的必要性,以及考虑为这些家庭提供便于获取的干预措施以改善其心理社会功能的必要性。

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