Rocchetti Matteo, Bassotti Alessandra, Corradi Jacopo, Damiani Stefano, Pasta Gianluigi, Annunziata Salvatore, Guerrieri Viviana, Mosconi Mario, Gentilini Davide, Brondino Natascia
Department of Brain and Behavioral Sciences, University of Pavia, 27100 Pavia, Italy.
Regional Center of Ehlers-Danlos Syndrome, IRCCS Ca' Granda Foundation, 20122 Milan, Italy.
Healthcare (Basel). 2021 Oct 30;9(11):1472. doi: 10.3390/healthcare9111472.
Ehlers-Danlos syndromes (EDS) have been associated with psychological distress, comorbid psychiatric disorders, and worsening in quality of life (QoL). Among the neurodevelopmental disorders, autism spectrum disorders (ASD) have shown the highest rates of co-occurrence with EDS. The reasons for these associations are unknown and a possible role of pain in increasing the risk of psychiatric disorders in EDS has been suggested. However, a detailed picture of an Italian EDS sample is still lacking.
We conducted a web-based survey in a third level center for the diagnosis of EDS in northern Italy, to investigate psychological distress, QoL, and the presence of autistic traits. Furthermore, we correlated the psychometric data with some clinical variables.
We observed a high rate of psychological distress with 91% of the responders at high risk of common mental disorders, low QoL, and high prevalence of autistic traits in EDS patients. Specifically, patients lacking a specific genetic test, diagnosed as suspects of EDS appeared to be at greater risk and reported worse psychological QoL. Pain was significantly associated with both psychological distress and worse QoL.
Our findings support the need of further research and of a multi-disciplinary approach to EDS including psychological and psychiatric liaison.
埃勒斯-当洛综合征（EDS）与心理困扰、共病精神障碍以及生活质量（QoL）下降有关。在神经发育障碍中，自闭症谱系障碍（ASD）与EDS的共病率最高。这些关联的原因尚不清楚，有人提出疼痛可能在增加EDS患者患精神障碍的风险中起作用。然而，意大利EDS样本的详细情况仍然缺乏。
我们在意大利北部一家三级EDS诊断中心进行了一项基于网络的调查，以调查心理困扰、生活质量和自闭症特征的存在情况。此外，我们将心理测量数据与一些临床变量进行了关联分析。
我们观察到心理困扰发生率很高，91%的受访者有患常见精神障碍的高风险、生活质量低以及EDS患者自闭症特征的高患病率。具体而言，缺乏特定基因检测、被诊断为EDS疑似患者的似乎风险更大，且报告的心理生活质量更差。疼痛与心理困扰和更差的生活质量均显著相关。
我们的研究结果支持对EDS进行进一步研究以及采用包括心理和精神科联络在内的多学科方法的必要性。
