Self-Reported Quality of Life and Depressive Symptoms in Children, Adolescents, and Adults with Duchenne Muscular Dystrophy: A Cross-Sectional Survey Study
Self-Reported Quality of Life and Depressive Symptoms in Children, Adolescents, and Adults with Duchenne Muscular Dystrophy: A Cross-Sectional Survey Study
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DOI：
10.1055/s-0033-1347935
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发表时间：
2013-10-01
期刊：
影响因子：
1.4
通讯作者：
Schara, Ulrike
中科院分区：
文献类型：
--
作者：
Elsenbruch, Sigrid;Schmid, Julia;Schara, Ulrike
目的探讨杜氏肌营养不良症（DMD）对不同年龄组患者自我报告的健康相关生活质量（HRQOL）和抑郁症状的影响，以确定是否需要改善心理社会支持或咨询。方法在一家德国儿科神经病学诊所，我们对总共50名DMD患者进行了横断面问卷调查（即，n = 15例8 - 12岁儿童; n = 11例13 - 16岁青少年; n = 24例17 - 23岁青年）。我们使用经过验证的、适合年龄的工具评估了自我报告的HRQOL和抑郁症状。结果与已发表的其他慢性疾病男孩的正常数据相比，DMD儿童的HRQOL几乎所有方面都显著受损。与此相反，青少年和成人DMD并没有不同的HRQOL的心理社会领域公布的规范性数据，尽管HRQOL的身体方面的显着下降。在两个年龄组中均未观察到临床相关的抑郁症状。解释DMD可能并不总是与受损的社会心理HRQOL和临床抑郁症，虽然进行性的身体损害导致降低HRQOL的身体方面。只有儿童DMD表现出显着的损害，在社会心理方面的HRQOL要求心理干预，针对这个年龄组。
Aim We aimed to address the impact of Duchenne muscular dystrophy (DMD) on self-reported health-related quality of life (HRQOL) and depressive symptoms in different age groups of patients to discern a possible need for improved psychosocial support or counseling. Methods In a German clinic for pediatric neurology, we performed a cross-sectional questionnaire survey in a total of 50 patients with DMD (i.e., n = 15 children aged 8 to 12 years; n = 11 adolescents aged 13 to 16 years; n = 24 young adults aged 17 to 23 years). We assessed self-reported HRQOL and symptoms of depression using validated, age-appropriate instruments. Results In children with DMD, virtually all aspects of HRQOL were significantly impaired when compared with published normative data for boys with other chronic illnesses. On the contrary, adolescents and adults with DMD did not differ from published normative data in psychosocial areas of HRQOL, despite significant reductions in physical aspects of HRQOL. Clinically relevant depressive symptoms were not observed in either age group. Interpretation DMD may not always be associated with impaired psychosocial HRQOL and clinical depression, although progressive physical impairment leads to reduced physical aspects of HRQOL. Only children with DMD demonstrated marked impairments in psychosocial aspects of HRQOL calling for psychosocial interventions tailored to this age group.