Elsenbruch Sigrid, Schmid Julia, Lutz Soeren, Geers Brigitte, Schara Ulrike
Institute of Medical Psychology and Behavioral Immunobiology, University Hospital Essen, University of Duisburg-Essen, Essen, Germany.
Neuropediatrics. 2013 Oct;44(5):257-64. doi: 10.1055/s-0033-1347935. Epub 2013 Jun 21.
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.
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.
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.
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.
我们旨在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，以确定是否可能需要加强心理社会支持或咨询。
在一家德国儿科神经科诊所，我们对总共50例DMD患者进行了横断面问卷调查（即，8至12岁儿童15例；13至16岁青少年11例；17至23岁青年24例）。我们使用经过验证的、适合年龄的工具评估自我报告的HRQOL和抑郁症状。
与其他慢性病男孩的已发表规范数据相比，DMD患儿的HRQOL几乎所有方面均有显著受损。相反，尽管DMD青少年和成人的HRQOL身体方面显著下降，但在HRQOL的心理社会领域与已发表的规范数据并无差异。两个年龄组均未观察到具有临床意义的抑郁症状。
尽管进行性身体损伤导致HRQOL的身体方面下降，但DMD可能并不总是与心理社会HRQOL受损和临床抑郁症相关。只有DMD患儿在HRQOL的心理社会方面表现出明显受损，需要针对该年龄组量身定制心理社会干预措施。
