Baiardini Ilaria, Minetti Carlo, Bonifacino Simona, Porcu Anna, Klersy Catherine, Petralia Paolo, Balestracci Sara, Tarchino Filippo, Parodi Stefania, Canonica Giorgio Walter, Braido Fulvio
Allergy and Respiratory Disease, Department of Internal Medicine, University of Genoa, Genoa, Italy.
J Child Neurol. 2011 Jun;26(6):707-13. doi: 10.1177/0883073810389043. Epub 2011 Apr 11.
Duchenne muscular dystrophy results in a broad spectrum of physical and psychosocial consequences, both to patient and caregivers. This study was aimed to explore health-related quality of life and its possible determinants in Duchenne muscular dystrophy children and in their parents. Caregivers (21 mothers and 6 fathers; mean age, 40.04 years) of 27 Duchenne muscular dystrophy patients (mean age, 11.26 years) completed the validated Children Health Questionnaire-Parent Form 50 and the Family Strain Questionnaire. Children reported significantly lower scores than normative group in 10 of 15 Children Health Questionnaire dimensions. Only the use of wheelchairs (P = .02) and ventilators (P < .001) was significantly associated to lower health-related quality of life in Physical Functioning. On the contrary, Family Strain Questionnaire scores were not influenced by children's characteristics. Despite the presence of Duchenne muscular dystrophy deeply impairs health-related quality of life, some areas of well-being are present both in children and caregivers.
杜氏肌营养不良症会给患者及其照料者带来广泛的身体和心理社会后果。本研究旨在探讨杜氏肌营养不良症患儿及其父母与健康相关的生活质量及其可能的决定因素。27名杜氏肌营养不良症患者（平均年龄11.26岁）的照料者（21名母亲和6名父亲；平均年龄40.04岁）完成了经过验证的儿童健康问卷家长版50以及家庭压力问卷。在儿童健康问卷的15个维度中，儿童报告的分数在10个维度上显著低于正常组。在身体功能方面，仅轮椅的使用（P = 0.02）和呼吸机的使用（P < 0.001）与较低的健康相关生活质量显著相关。相反，家庭压力问卷的分数不受儿童特征的影响。尽管杜氏肌营养不良症的存在严重损害了健康相关生活质量，但儿童和照料者都存在一些幸福领域。
